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Old 11-12-2017, 08:10 AM   #261
Batbite24
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Originally Posted by monkeyman View Post
Sorry for the late reply, and sorry to hear it's that bad. I'm surprised they haven't prescribed anti seizure meds.

Do you know anyone that's had a spinal tap gone wrong? I'm pretty much stuck between getting that test with possible discovery/treatment, or living with these challenging symptoms indefinitely. It's interesting how some of us (you and I, Albertakewl etc.) seem to have similar symptoms and haven't gotten better...
Thank you for the response, monkeyman. My recovery such as it is seems to be following an up and down course with very slow forward progress. The siezures and myoclonus are all but gone. There was one stressful event (storm water damage to a rental property of mine) that caused a return of the hypnic jerks for a night or two. The nerve pain in my left leg comes and goes, but when I have it, it's pretty severe. The biggest quality of life issue I have now is lack of energy...that is an every day thing...not enough energy to really do the things I want to.

As for the spinal tap information, no, I do not personally know anyone with a spinal tap gone wrong. There was recently an article in the health section of our newspaper about a young mother whose spinal puncture did not seal, and it has ruined her life. She is basically bed bound, in constant pain, can only sit up or stand for very brief periods before having to lie down again, the family has had to hire child care, housekeeping and cooking help, and she can't go out to do anything. Several members of her family are physicians and even with resources like that they have not been able to find any solutions for her.
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Old 11-17-2017, 08:38 PM   #262
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Default Well;

Here it is, November 17, and until today the Thanksgiving preparations had been moving along just fine. Cleaning one room a day, guest beds are all fresh and ready. Today we brought the dog to the groomer, and I shopped three grocery stores gathering in all the holiday favorite foods. Hubby did all the driving and heavy lifting. Did one load of laundry, prepared dinner, ate, loaded the dishwasher. 7:00 P.M. after dinner, I'm tired and lay down in the recliner with hot water bottles on my low back and the screaming nerve in my left leg.....just drifting off into a nice deep sleep, 7:30 P.M. and the right leg tenses up and the right foot then takes off twitching and fluttering like a butterfly. That hasn't happened since about 10 months ago. 8:00 P.M. and every muscle in my body is tensed and vibrating and twitching...fortunately for only about 10 minutes. Seems to hold true for me as for several others on this forum...physical exhertion = relapses of the neurological problems. And again the self talk telling myself this will pass, it's been worse before, and I'll be fine. I remind myself that ATX_Man said he had a relapse at 16 months out, and I'm just approaching the one year mark.
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Old 11-25-2017, 08:15 AM   #263
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Survived a very busy Thanksgiving with no further neurological issues. Had a lot more help than usual from hubby, and daughter and son-in-law came into town a day early to help. It was still a lot of work and I had to push myself, and remind myself to sit down for 20-30 minutes every so often, but it all got done and I was able to enjoy everything with no issues. Very thankful indeed!
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Old 12-14-2017, 05:55 PM   #264
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Hello,

Just a little a little update to you all. I am still fight with this reaction, but I can say I am a bit better then when this first happened 4 years ago( I am on my 4th year of this now.) most of my symptoms are gone except for a few. Some come and some go. When my anxiety gets high, I try and focus on something else. It has been a very hard 4 years, let me tel you. I don’t take no medication no more . Because I noticed that was making me feel like in a fog. It’s been a tough journey .
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Old 12-14-2017, 06:44 PM   #265
Batbite24
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Thanks for checking back in, Alberta! It's important for the rest of us to hear the truths (and triumphs!) of those who are longer term past vaccination. Sorry to hear that this situation continues to be a struggle. As thankful as I am for how much better things have become in the last year, the realities of lack of energy and my legs still not "being right" are slowly sinking in. ...haven't given up hope of more improvement, I'm a fighter, but I'm also beginning to wonder how much of this will be permanent. Again, thank you for checking in and updating us, it's very much appreciated.
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Old 12-24-2017, 08:34 AM   #266
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It's Christmas Eve and today marks exactly one year since I was bitten by a bat and required the rabies vaccine series. I'm sitting in my dining room watching a lovely gentle snowfall, and my husband is out walking the dog (sadly, I still can't join them.) I can ride a stationary bike, but long walks and spending any extended amount of time standing....the legs still aren't right, and low energy and fatigue are still a problem. Housework that used to be done in a day or two has now become a constant effort broken down into smaller daily task lists. But I'm still here, the siezures have stopped, the brain fog has abated, no more auditory hallucinations, only rarely hypnic jerks as I fall asleep after an unusually taxing day, and I didn't die of rabies. Last week I was strong enough to stay by my daughter's side and be her avocate through a serious medical crisis. Today I will enjoy the company of three generations of family, of which I am the "Grand Old Matriarch." Life is not perfect, but I'm very grateful.
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Old 01-16-2018, 09:54 PM   #267
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Default Sad news out of Florida

Just read of a little 6 year old boy in Florida who died of rabies after being scratched (bitten?) by a bat. He had no post exposure prophylaxis, and when he got sick (within weeks) the doctors tried the Milwaukee protocol, but it failed. Prayers go out for the family. How do you ever come to terms with something like that? The article went on to state that 35,000-40,000 people in the United States receive the post exposure prophylaxis each year. Even though rabies deaths have become rare, I think there still needs to be way more public health education regarding rabies. These parents obviously had no idea how serious the risk.
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Old 03-12-2018, 10:19 AM   #268
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Confused Once again

So thankful once again for this forum. I'm 14 months out from completing the vaccine, was really beginning to feel great, energy levels way up and life normalizing very nicely, and then the insomnia, myoclonus and sensation of a tight throat returned. So far not as bad as originally, but bummer, bummer, bummer! If not for ATX_Man reporting his relapse at 16 months out and Alberta reporting some relapsing at 4 years out, I'd have been in a panic again last night. No panic, just acceptance and dogged determination thanks to all my fellow posters and this forum. We'll see how this all plays out.
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Old 04-01-2018, 04:15 PM   #269
Hope21
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Default Tingling Sensation after 3rd Shot

Hi everyone,

I'm new here and I just finished my 3rd rabies vaccine shot 5 days ago. Ever since, I've been feeling tingling sensations on my left hand and because of it, I've had a lot of anxiety and am feeling pretty stressed out about it. Finding this forum was a huge relief for me and I'm hoping that it'll continue to help me find peace of mind!

For those of you who have experienced these tingling sensations, how would you describe them? And would you say that the location of your shot (i.e. whether you had it on your left or right arm) impacts the place at which the tingling sensations start? I had my last Imovax shot on my left arm. However, the sensations seem to have started close to where the bite was (in my palms, close to the base of my left thumb), but now I can feel them every now and then, along the edges of my palms and close to the base of my fingers. I do have tingling sensations occasionally on my right hand and both of my feet, but it is not as frequent.

Also, for those of you who have done titers, how far along in your treatment did you get your blood test? My doctor initially recommended against doing a titer for antibodies, saying that if it comes back negative, then it could simply mean that my body is taking longer than average to created the IgG and that it would be a source of severe stress for me. However, after seeing how anxious I was about this whole ordeal, he said that we should probably do it 3 weeks after my last shot. Is that in line with what you've experienced?

Just a bit of background, I was bit by a stray cat (it was not unprovoked, as a few of my classmates and I were petting it). The cat seemed pretty affectionate, as it was rubbing its body against our legs, but it may have been overstimulated by all the attention when it bit me on my left hand. Although there was no puncture wound, there were 2 pink lines (which disappeared the next day). I was still freaked out about it, so I started PEP immediately (within 3 hours of the incident) with rabies vaccine injections (along with HRIG), another on Day 3, 7 and I will have my last one in 2 days.
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Old 04-03-2018, 08:45 AM   #270
Batbite24
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Default Welcome Hope21

Glad you found this community, and welcome to a small, exclusive group you never wanted to join. Take a deep breath, hope for the best, and realize that each person's experience may be a bit different. The great majority of us have come through and are much better. Improvement takes a long time, and sometimes things get worse before real improvement sets in. My bat bites were in the back and palm of my right hand, the tingling and burning began in the palms of both hands, and eventually the feet, it all has to do with the nerves being affected not so much by the bite as by the vaccine. I can't address your titer questions as I never had a titer done. Hopefully other veteran posters are still checking in and will contribute. The anxiety can be horrendous, and I think some of it is a natural response to a truly frightening situation, and some of it is neurological caused by the vaccine. Hope it doesn't get too bad for you. For me it was like riding out a hurricane in a rowboat, but that storm has passed. I'm now 15 months out and doing well. At this point I'd call it tiny setbacks and large improvements. I'm much stronger, less fatigued, and have only tiny little reminders of this whole experience when I really push myself very, very hard physically. Hang in there, and hopefully the course this runs with you will be mild. We're here for you.
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