Eye pain bad, tinnitus is HORRIBLE. I heard it above 70+mph road noise all the way here, a 10 hour drive. A few days ago, I only heard if it was quiet, now I hear it over everything. It's gotten so much worse!
I can't stand this. I'm in hell. My eyes and ears, the way I take in the world, have turned on me. There is no rest, no peace, no minute free from pain. I can't find anyone to help me.
My God, I can't live like this. Why can't somebody help me?
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I'm supposed to start a new abx protocol tomorrow.
Other meds are Wellbutrin xl, Lyrica, Lamictal, Diamox, Ativan, and I have some vicodin for when the pain is bad.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
I'm scared. I love my family so much, but I can't live like this much longer.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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lax mom
Frequent Contributor (1K+ posts)
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posted
Deep breaths sideways. I know it's complete torture. I have never had tinnitus but have had vertigo.
Can you take some Ativan? Even though you are dealing with sensory torture, at least it would help you to be relaxed and not notice it as much?
posted
I was on Zith for 8 months after I got diagnosed. The tinnitus started 6 months in, but I didn't know to go off it. As soon as I found online that zith can cause tinnitus, I took myself off it.This was last June.
The tinnitus hasn't gone away though, and as only gotten worse.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
What is a quinolone so I know to avoid it. Is Malrone a quinolone? I'm supposed to staring it tomorrow.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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lax mom
Frequent Contributor (1K+ posts)
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posted
Meds like Cipro, Levaquin. The generics have "flox" in their name.
posted
Thank you. I took a vicodin and got the pain under control. I just can't do that on a regular basis though. Something has to get better.
I actually took Cipro last summer, a 3-4 months after the tinnitus started. Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
OH no. I wish those drugs had WARNINGS on them!!! Even the tendon issue is really bad with those.
Glad you took a pain pill.
Good night!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
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sideways,
I understand you feeling like you can't live like that much longer. I felt like that too a few years ago.
Fortunately I hung in there and doxy finally lowered my pain level from a 10 to about a 5...tolerable.
You will make it.
I am praying for you right now.
Big hugs!!!!!!!!!!!!!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I know it's bad, but I think you should hang in there to see what could help alleviate.
For eyes, I drink a small amount of mangosteen juice everyday - we're all different, but for me, it completely stops eye symptoms. I recommend the Mango-Xan version, as it's the most tart. You can find it in healthfood stores and online.
For the tinnitus, assuming it's not meds that are setting it off, something worked for mine, creating 6 hours of total quiet afterwards (!), and maybe that time could have increased if I had continued with the modality.
It's a 400-700 gauss machine that emits magnetic clicks. We hold a white coil which emits the pulses. A top Lyme doctor said it probably quieted down the nerves to the ears.
So I suggest you check around with chiropractors, physical therapists, any kind of wholistic healers you can think of and ask whether anyone knows of anyone with such a machine that you could try.
For pain treatment before I knew about Lyme, I rotated 3-5 pain meds, so as to take each one less often. That seemed to work for me, in that it slowed down the increase in tolerance and thus kept med amounts down.
When one got up too high in dose, I'd drop it out for a while, and then could start up again at a lower dose. I really think that's the way to go with pain meds when we're dealing with chronic pain.
I also tried to just take them at night when I needed to sleep, and tried to manage the pain level other ways when awake.
Posts: 13116 | From San Francisco | Registered: May 2006
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dbpei
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sideways, my heart goes out to you. I also have been struggling with horrible tinnitus throughout this whole horrible journey. I have also had severe hearing loss in one ear. I don't struggle with the pain you are dealing with. But I hope the following suggestions might help you.
Some of the things that have helped to calm my tinnitus are the following:
1. I stopped zithromax - as it also caused me to lose more hearing, while worsening my tinnitus. I replaced this with Biaxin, which seemed to be okay. Unfortunately, many of the meds that treat lyme are ototoxic. If you do a google search with Neil Bauman and the name of the drug, you will find lots of valuable information.
2. Very important to avoid loud noise (protect your ears with ear plugs if you are exposed to vacuum cleaners, machinery, loud music, etc) while you are taking ototoxic antibiotics. The combination is deadly and can cause irreversible hearing loss as well as tinnitus.
3. I take Lysine - 2 grams twice a day. Protects agains herpes virus, which can be associated with hearing loss and tinnitus. It seems whenever I stop taking this, my symptoms worsen.
4. Vinpocetine has helped many. Stephen Buhner strongly recommends this for tinnitus. It is a vasodilator. (For some gingko can help)
5. Magnesium helps to calm the ear nerves and it is also protective - may prevent hearing loss.
6. I listen to soft music while at home on my computer. It really helps to mask the noise. At night, I use a small electric water fountain that is very soothing. It doesn't get rid of the tinnitus, but it masks it and helps to calm me.
7. Yoga helps the body and mind - good for both tinnitus and pain.
8. Getting enough sleep makes a huge difference for me. Of course, when you suffer from Lyme, that is a tall order. I notice that my tinnitus is usually better following nights that I had a decent rest.
Sending hugs your way. I hope this helps. By the way, I have heard from many whose tinnitus has gradually improved as their lyme was treated. It takes a while...
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I hope you feel better soon.
Posts: 870 | From ct | Registered: Nov 2012
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lax mom
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I think another LN member said he took pain pills and they helped because they calmed down the CNS. If you need it, take it.
I remember watching "What About Bob" once and he asked someone to please punch him and knock him out...I know how you feel to just want to be sedated until it's over.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
sideways, I understand... It has been the most difficult thing to live with the constant noise in my head. I want you to know that it will get better over time with treatment.
My tinnitus is better now than it was a year ago. It is still there, but it is more tolerable. There are some who completely get rid of it over time as their lyme heals.
To get through this difficult period, you might want to ask your LLMD about taking klonopin. You have to be careful, as this is a benzodiazepine. They can be addictive. If you think you would be able to take a small dose and stick to that dosage, it may really help you to get through this difficult period.
Posts: 2386 | From New England | Registered: Aug 2011
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I just posted in Medical that I think this sudden increase in tinnitus might be due to Diamox. I went on it last week and the sudden increase in tinnitus started on Saturday.
I'm not going to take it anymore. I just hope the tinnitus goes back to what it was! I at least had some coping skills with that noise level! Now I hear it over everything!
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Native Remedies sells a product called Tinnarex. They are herbs that you mix with water and drink.
When my tinnitus gets really bad I take these diligently until it goes back to a tolerable level and they help.
I know how horrendous these symptoms are. Hang in there, try the Tinnarex.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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GretaM
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Hi Sideways. How are you feeling today? Did discontinuing that other medication help with your tinnitus?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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A little better with the tinnitus, though its still louder than usual. I definitely think it was the Diamox that caused it. My eye pain was bad today, so I'm functioning with the help of pharmaceuticals tonight. Hopefully it will all be better tomorrow. Thanks for asking. Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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TF
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Glad to hear it is getting better, sideways.
Posts: 9931 | From Maryland | Registered: Dec 2007
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phyl6648
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Sideways, I hear you. The tinnitus is with me 24/7 and so do many of your symptoms. I get so depressed and sick and tired of living this way but know I can't and won't give up. By the way my tinnitus is not caused my meds as of now I am on none except Xanax.
Clindamycin helped a lot with the ear, sinus , vision and off balance problems till my gut could no longer handle it.
I don't have an answer but certainly can sympathize with you..
Its hell.
Posts: 1058 | From VA | Registered: Oct 2010
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phyl6648
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Sideways, I hear you. The tinnitus is with me 24/7 and so do many of your symptoms. I get so depressed and sick and tired of living this way but know I can't and won't give up. By the way my tinnitus is not caused my meds as of now I am on none except Xanax.
Clindamycin helped a lot with the ear, sinus , vision and off balance problems till my gut could no longer handle it.
I don't have an answer but certainly can sympathize with you..
Its hell.
Posts: 1058 | From VA | Registered: Oct 2010
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We are back in VA now. Tinnitus is a bit better. I think the diamox made it worse, so I quit taking it.
Eyes are still bad. My eye doctors are bewildered as to what's wrong. I'm now wondering if it's bartonella. I took cipro for a month last year, and it didn't seem to make a difference. But then, I don't herx. I'm wondering if I was undertreated? Maybe a month just wasn't enough?
I'm just at a loss. I really don't think this is going to get better.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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lyme in Putnam
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One day at a time. God bless,
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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