LymeNet Flash: living in the dark

This is topic living in the dark in forum Medical Questions at LymeNet Flash.

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Posted by lymewarrior03 (Member # 3891) on :

Hi anyone out there have such bad migraines and light sensitivity that they have to live in the dark?

Posted by feelfit (Member # 12770) on :

I do Warrior. Not everyday, but about 1 1/2 -2 weeks per month. How long have you been having the migraines? Have you found that no medicine seems to help?

Feelfit

Posted by lymewarrior03 (Member # 3891) on :

I have had them for 5 years-only help from DHE but it only helps for a day or so-I am now disabled and have to stay in the dark

Posted by feelfit (Member # 12770) on :

So sorry. What is DHE?

Posted by canbravelyme (Member # 9785) on :

Hi Warrior,

I read the title of your post, and I said to myself, "Oh G-d!"

I had to live in the dark for most of a year. We blacked out the windows in our bedroom and bathroom with black bristol board.

I was in such excruciating neuropathic pain at the time - burning pain from head to toe and pain behind my eyes with grit feeling as well.

When I would expose my skin to the light, on top of the intense burning pain I would experience muscle pain. By the end of the day, I felt like I'd been physically beaten.

I walked around dressed like a mummy.

I was having seizures that were undiagnosed at the time. Spasticity on top of all this - in particular when the temp in the house would hit 68F, I would start to cramp.

I remember thinking I've looked down the pipe well of hell, and I don't need to see any further - I can surmise.

What helped? Lyme treatment. Lyrica for burning pain and partial seizures, and eventually Lamictal for seizures.

Perhaps your doctor would be able to try other symptom management medications until you find one that helps - while you are recovering, you can experience some better quality of life.

If your LLMD hasn't seen and resolved the symptoms you're experiencing in other patients, then my suggestion to you is to call around other LLMDs (you can discuss the choice with others in the, "Finding a Doctor" forum) and ask the receptionist to ask the doctor whether s/he has:

1. Seen this constallation of symptoms previously

2. Was able to resolve it for that patient.

This is what I did, and I have a somewhat reasonable amount of life now.

And in the meanwhile, solidarity and cool wishes to you.

BTW, I spent a considerable amount of time in contemplation of the Vampire:

1. Bit by a bat (infectious disease)
2. Has to stay in the absolute dark or is in danger of dying.

[kiss]

Posted by Keebler (Member # 12673) on :

-
For me: 40 and 60 watt light bulbs are very nice - good lamp shades where there is no shine through. Fluorescents are out.

I love cloudy days. Simply love them.
-

Posted by canbravelyme (Member # 9785) on :

Now that you mention lightbulbs - I use half-silvers (Google "half-silver lightbulbs).

The top 1/2 of the bulb has a mirrored surface, so that light from the filament bounces back onto the ceiling (if the bulb is facing down) for indirect light.

I think I'm using 40W or 60W as well.

Best Wishes,

Posted by sutherngrl (Member # 16270) on :

This happens to me about once or twice a month. Mainly at night when I am really tired. It hits all of a sudden and once it does I cannot look at the tv or any lights.

I have a headache with it, but usually not severe as you expect from a migraine. But the eyes hurt horribly.

I tried some very expensive migraine medication, 27 dollars a pill, but discovered it didn't work. So technically I don't know if this is a migraine or just a lyme symptom.

Posted by bettyg (Member # 6147) on :

i don't have the headaches, but must be as dark as i can get it in my home.

member, brenda's HS daughter, has headaches/lights really bad. she has to travel UNDER BLANKETS so no light gets in during 14-15 hr. roundtrips to llmd!

Posted by dguy (Member # 8979) on :

I used to get headaches from light exposure too. It's one of the symptoms of hypervitaminosis D. Cutting my dietary vitamin D intake has helped.

Posted by canbravelyme (Member # 9785) on :

Quitting Vitamin D helped me as well.

Posted by lymewarrior03 (Member # 3891) on :

Thanks for the information and responses! it is an awful way to live. DHE is migrainol.