I wonder if anyone has ever sufered from cranial nerves inflammation and got any better with treatment? Mine are ALL inflammed and on both sides... I wonder how I am still alive with this tremendous amount of pain that is there 24 hours a day , I've been dealing with this for a year now... They literally feel swollen and like they will explode... I have tried everything (anti inflammatories, mangosteen juice, cymbalta, SAMe, Elavil...) , nothing seems to help... The pain sometimes varies in intensity, I may have one day a month where it will lessen by 30 % but the day after it comes back again worse than ever... Because of this variation I try to keep hope and think that maybe this is not permanent damage but nerve inflmmation that can go away with treatment, but I don't see anyone complaining about that or getting better from it... It's exactly like trigeminal neuralgia but everywhere, trigeminal, occipital... al my nerves... Please help, what treatment could get rid of this pain?!!!
Posts: 723 | From Montreal | Registered: Oct 2010
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Posts: 723 | From Montreal | Registered: Oct 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I don't want to dissuade from other Tx for what you're going through, but I had constant and severe, debilitating headaches for a couple of months straight right after I got re-infected. That was in 2006. A regular ID doc put me on Rocephin and they went away and have not returned. I get regular headaches on occasion, but not near the intensity and only for a day or so then gone.
For your CNS specifically, have you tried methyl-B12 shots? I love 'em. Supposedly, they help protect (some MDs say "repair- I don't know which is correct) nerves' myelin sheaths.
For me, they took about 3 months to kick in, which I think is pretty standard (2-3 months). I didn't have the pain you're speaking of though. But the injections really help normalize my emotions and I think some twitching, too. If you do a search here about them (aka methylcobalamin), you'll gather a heap of results.
Also, what about increasing your magnesium?
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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I do get B complex injections at my Dr office, but sp far not really helping yet... So do you think IV rocephin coud help cranial neuropathy?
Posts: 723 | From Montreal | Registered: Oct 2010
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Dawn in VA
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Keep in mind that B-complex shots are TOTALLY different than methyl B-12. To have the CNS impact above, that CH3 (methyl) group is paramount.
I don't know for sure about the Rocephin, just about my own experience with those headaches. Maybe if you haven't made progress on any oral ABX treatment you're on, IVs (not only Rocephin) might be something to consider asking your LLMD about.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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steve1906
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I actually wonder if the neuropathy is caused by lyme neurtoxins when the bacteria dies, it seems that those of us who have this symptom get worse during treatment...
Posts: 723 | From Montreal | Registered: Oct 2010
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TF
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Member # 14183
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I would like to understand what exactly your symptom is. Is it pain all over your head 24/7?
If so, is it aching pain, throbbing pain, shooting pain, stabbing pain, or some other description?
I know trigeminal neuralgia because I suffered with it. It is not pain 24/7. It is an electrocuting type pain that comes and goes. It is in a very specific location. It is unbearable when it comes and makes you cry out, just as if you had been electrocuted. That electrocuting pain only lasts a few seconds.
So, again, if you would describe the symptom, that would help me.
Also, did a doctor give you the diagnosis of cranial nerve inflammation or is that your own opinion of what is wrong with you? I never had a lyme doctor tell me or any of my friends that they had cranial nerve inflammation.
Just trying to get a handle on your exact symptom so I can, perhaps, give you some ideas. I have known a lot of people with lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF thank you verymuch for your help! Well the cranial nerve inflammation is my own diagnosis, not the doctor's but because I have bell's palsy on my left side , I thought that all my cranial nerves are inflammed... I hardly ever get "electric shoks", it only happened when I tried Elavil, so needless to say I stopped it right away... My pain is aching, sometimes stabbing (though less now than few months ago). So if it is not nerve inflammation, maybe I am missing some neurotransmitters so my nerves don't receive a proper signal? I don't know I am just so tired of this pain... By the way, I have the same nerve pain all over my body too, it's just that the head is what kills me the most... I can't even think properly...I have also noticed that this pain gets worse with stress and better when I have some good news or any "happy" event, but again gets worse as soon as my mind is back to "reality"... if you or anyone has any suggestion, it would be great!! I am also starting to explore some pituitary disfunction, but I don't know if that could cause this kind of pain... Oh I forgot to mention that chewing numbs the pain, just like walking helps the pain in my legs.. so it could be a circulation problem, but where does it start?...
Posts: 723 | From Montreal | Registered: Oct 2010
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Have you tried gabapentin for the pain?? (neurontin)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
MOST lyme patients suffer with pain. The pain you are describing is typical for lyme disease patients.
Neurontin helps many people if their pain is actually nerve pain. Others take narcotic pain killers when the pain is really bad.
Good lyme treatment gets rid of this pain. When you have a herx, the pain will get really bad. That is the proof that the pain is caused by the lyme bacteria.
If moving a part of the body gets rid of the pain, then I agree that improving circulation is a good idea. Why not try weight lifting. Burrascano advises all lyme patients to lift weights. Light weights with many repetitions.
He says to do it for a full hour, every other day (or less, but never more). If it takes 5 days of rest to recover from the full hour, then you just do it every 5 days.
This really worked for me, and my worst symptom was extreme muscle weakness all over my body. I could not hold the phone to talk on it for more than 30 seconds, my arm was so weak. I could not hold my mouth open to have my teeth cleaned. My jaw muscles would cry out in agonizing pain!
The weight lifting will certainly improve circulation, which could do wonders for your pain. And they believe it most likely drives the antibiotics deeper into your tissues, killing more lyme. Most importantly, it is believed that this type of exercise will strengthen your immune system.
I was told by my lyme doctor that I would NEVER get rid of lyme unless I did this Burrascano type exercise program. Not aerobics.
Lift soup cans with your arms, if that's all you have. Do crunches, slow deep knee bends against a door (for back and legs), leg lifts with light weights on your legs, pull down pulleys, half push-ups, etc.
Here is a quote from Burrascano about the benefits of this type of exercise:
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories. It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective. Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed.
The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts.
However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row. Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal. On the following page is an exercise prescription that details these recommendations." (from page 31)
Try many, many things to get rid of the pain. Notice if something works, even a little.
Try Ultram. It often works well for nerve pain. Try anti-depressants. They, surprisingly, work for nerve pain. For example, zoloft. I have a neighbor who has terrible sciatic nerve pain from a very injured back, and pain management doc put her on zoloft permanently for this reason. It works for her.
Try anti-inflammatories (ask doc for some), try benadryl also. That is what ultimately helped my trigeminal neuralgia because it shrunk the swollen sinus cavities, evidently, and that took the pressure off of my trigeminal nerve.
One doctor has an anti-inflammation lyme diet. Try that also.
I really hope you find something that works for you. Don't worry about it being permanent nerve damage because it is not. It is typical, excruciating lyme disease pain.
Please let us know if you find something that works. Your find could help many, many other sufferers. Let us know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Wow thank you so much for these advice TF!! I will look into benadryl, and yes I have just started exercicing regularly and the days I exercice, the pain does get better, but the day after, it starts again... Anyway, i will let you know the progress...
Posts: 723 | From Montreal | Registered: Oct 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ditto on the anti-inflammatories. Since most have been pulled from the market now, you could try Zyflamend (made by New Chapter). It got me off Rx Bextra. And you can pretty much buy it anywhere online.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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