thanks!
gigi
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mom2babyd |
Head Zapping Anyone? |
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Hi Everyone, I haven't initiated a new post in a while, so here goes.....I'm very fortunate in that I have some days now where i forget for long
stretches of time that WN was ever in my life; i'm hopeful with more time everyday will be that way, but i'm grateful for as much healing and relief
i've had thus far. One symptom that has never gone away and comes and goes throughout the day is a bizarre and hard to describe head zappy feeling.
It's a bit like a fuzz or short circuit feeling my head. sometimes it feels like it's only in my head region and sometimes it spreads to my face too.
It's different than the nerve type of pain i had in my arms and legs and it's not constant. I do have some days where i won't have any
'zaps' and those are awesome days, as i can honestly say i do have some awesome days. I tried to describe the zaps to my neuro and she just said to be
patient and all the other things are getting better and this will too, but just wanted opinions and experiences from others.
thanks! gigi |
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Jclauson |
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I know exactaly what you are feeling. I get them too. It's pretty wierd and scary. It almost feels like someone is flipping a switch and turning me
"off" or that I am short circuiting. I really do not know why this is. I have seen just about every specialist and they can not explain it to me
other than nerve damage to brain or optic nerve. I have an appt with an eye doc this week to see if they can give me anything new. If that does not work,
I'll be seeing a balance disorder specialist.
Nerve healing does take time. So if these zaps are at all related to nerve damage, then it could be the process of healing. With nerve healing, you will feel more sensation or pain when they heal because they are either re-firing or creating a new path of firing. I would hope that whatever this symptom is, it will not last years or forever but only short term. I also think it could be from inflamation of some kind. Inflamation is a key method our body creates to heal. I do notice that if I take an antiflamatory, it does help this symptom. Not sure why. Can you tell if any particular movement you do brings this zap on? Good luck! |
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mom2babyd |
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hi! thanks so much for responding. i was starting to feel isolated and on an iceberg in this one. you taking the time to respond has brightened my day
already! I also like your updated profile pic! Luckily my zaps aren't affecting my vision, they are mostly like a fuzz washing over my head and then
tingling in the lower part of my face, which does confirm what you stated that its nerve related. It's vaguely reminiscent of the nerve pain i got in
other parts of my body, but not with the same heat/fire. it's a quick zap tingle and then gone. the faster i move and/or twist, reach, close something
they happen. I try to move slow (not always possible with a toddler) and they are silent when i'm still. the zaps are less intense and less frequent
than they were at the beginning of the week and i'm hoping will fade out with this flare....but like you mentioned, if nerves are regenerating and healing,
then that might be the culprit and to come so long and strong this time with a flare up there is definitely inflamation involved. I'll try to take an
advil for anti-inflamitory relief to see if that will help me.
Does your zapping happen all the time, just when you are in a flare up and does movement bring them on for you too? they also bring on anxiety for me which doesn't help. thanks again so much for reaching back to me. It means a lot! gigi |
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elaine |
head zapping anyone? | ||
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Hi,
I have not noticed exactly what you've mentioned but I do have a lot of electrical type pains but it's been more in my feet and fingers. I still get numbness in my face sometimes but not as much. I do notice that my nervous system is definitely not right and I too hope it will eventually get better. The least little anxiety or stress can cause me to get the sweats. I have had lots more blood work and tests and it has been confirmed that I have hypoglycemia so no wonder that I always felt sick after eating sugar. I am waiting to go to a dietitian to get help. I think I have had this for a long time and I always thought it was the West Nile. The symptoms are very similar so it complicates things. At first my dr. didn't think I had it even after the glucose tolerance test but other blood work confirmed that I do have it. The endocrinologist said that this could be why I am so weak. ( I had been getting stronger.) I especially feel lousy in the morning. I had already been eating every 3 hours and not eating sugar but eating lots of protein so this is hard because I still don't feel at all well. I'm hoping that by cutting out carbs it will help and am anxious to get help from the dietitian. I also tested low for Vit D so am taking lots of Vit. and Calcium. The endocrinologist said that viral infections (as the WNV) could cause other problems (as hypoglycemia) do occur. I haven't posted much lately because I wasn't up to it but my husband always checks the site for me and keeps me up to date. It helps. Elaine |
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elaine |
head zapping anyone? | ||
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p.s. Head seems to trigger tingling and pain; as well as how I feel in general.
elaine |
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elaine |
head zapping anyone? | ||
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pps. Sorry, I meant Heat seems to trigger problems.
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Jclauson |
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Gigi-
The "zapping" happens primarily with certain movement, especially when in a vehicle. That seems to be the worst for some reason. I have not been able to pinpoint the exact movement that does it but am hoping I can figure it out. It does seem to be related to stretching my eyes to see something. I used to get anxiety quite bad with flare ups, but think I am getting used to what to expect with flare ups and do not feel so threatened (if you will) so the anxiety is better. I also believe that the anxiety is directly related to the neurological sensitivity. I am finding that as my neurological system is healing and the symptoms are not as often as before, that the anxiety seems to be on par with that progress. I have never had anxiety until West Nile, but can say after two years it is getting better finally. I hope you can find relief with an anti-inflammatory. I also know there is such a thing as an anti-inflammatory diet which I am looking into. I really prefer to do things as natural as possible. I do notice a connection with inflammation and WNV flare ups so I'm hoping (if the diet is do-able for me) that it reduces the number of flare ups. Maybe someone else will also offer some input with respect to their experiences and I am glad you feel comfortable to reach out and post questions. We are all in this together and if it was not for having the ability to reach out to each other, where would we be? This disease is lonely enough, thank goodness for the good folks here. Elaine- So sorry to hear you are not well. Your electrical pain in legs/feet sound like Neuropathy symptoms. Hopefully they will heal over time. I'm not to sure how much Neuropathy heals but am hoping 100%. I too have Neuropathy in all limbs and poor circulation. The pain and numbness can be really terrible some days. The cold weather does not help. Hypoglycemia has its own set of weird symptoms and am glad you got something else figured out. Hopefully with a diet correction and some medication you will yet advance to another positive level of wellness. I will pray for your progress. Be well to all and God Bless! |
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mom2babyd |
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HI J, Thanks for the latest response. I've never checked into nor heard of anti-inflammatory diet, but i'm all over the natural approach. I do
Feldenkrais weekly and also acupuncture monthly now (used to do it every week in the beginning). I'll look into the diet for sure. And after thinking
about what you said about the eyes, i actually thought about it a bit more and i didn't realize before that sometimes it is related to my eyes stretching
to see something. I thought it was just movement b/c when i'm sitting still they don't really happen; the only time i'm sitting still and do get
them is when i'm driving. I've had them all along since my infection, but i've just never had them all day all the time like i am now...i think
it's just the main ingredient in this flare. I'm glad you are less anxious with time as your flares are weaker and shorter in duration with time. I
pray that this trend continues for you and that one day it will be all clear for all of us with these issues.
I did have the terrible burning neuropathy pain in my legs and feet for several months early on in my infection, but when i started the cymbalta, the volume and pain was turned down tremendously and eventually stopped altogether and phased out. I'm beginning to ween from the cymbalta now as i've been on it a year and that's what me and my doc talked about, so i'm nervous not only about the nerve pain potentially returning as the cymbalta blocked the nerve pain sensor in the brain, but also a stronger anxiety feeling with flares that the cymbalta is managing as it keeps the serotonin in my brain level. Elaine i sympathize on the no sugar. I'm also on a no sugar diet and try to cut white carbs as well because i have poly cystic ovaries and glucose tolerance issues....great how we seem to be not only the few to get the crazy WN, but have other fun issues as well. I'm also extremely heat sensitive too. i've always been heat sensitive prior to WN i would get a bit anxious and feel smothered and weak when it was hot and humid, but it's waayyyyy worse now! good sleep and positive thoughts to aid your recoveries are my wishes for you! gigi |
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Jclauson |
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I have had flares like you describe where they last most of a day and can continue weeks at a time. I most recall last summer. I really do not know what caused
it by speculate it had something to do with the heat and inflamation. I'm sure our bodies go through their own unique healing process with inflamation
being a key component and unfortunately that process alone lends itself for WNV symptom flare ups. I suppose it is a necessary evil in some ways but somehow if
we can minimize the body's response to the inflamation we may be able to have a reduction in symptoms during the flare. I'm merely speculating here
based upon an educated guess.
In my experience, diet is primary in managing how I feel overall. Sugar as we all have found is a no-no. Glad to hear you minimize this. Diet is a life changing event, not a temproary one. If one is addicted to something, nerve pain is most common as a withdrawl effect. Keep this in mind if you do change your diet, it may get worse for a bit before it gets better. Nerve pain can also come as a result of nutritional deficiency. Herbs that are good for nerve pain are ginger powder and turmeric powder. I've heard that aswagandha powder is also good but never tried it. I drink a lot of green tea daily and add organic ginger and honey. Ginger not only helps nerve pain but helps the digestive system. I also use ginger and honey as the main spices in in all my veggie stir frys. It is yummy. Also one common reason in most people for nerve pain is magnesium defuiciency, which does not allow calcium to be absorbed. You may want to find a good supplement. Magnesium that is "reacted" is absorbed better by the body. "Reacted" is a process that attaches an amino acid to various minerals. Jiroffa's manufacturing company has seventy-four worldwide patents on the process and I use their brand which was researched and recommended to me by a Doctor. I am a huge believer in reacted minerals. Magnesium also helps improve cardiovascular health. This brand is also all natural. If you are having a bad nerve pain day, epson salt baths help calm down the nerves and muscles, maybe this will work for you also. And of coarse good sleep will also reduce nerve pain. Again, hot tea with honey at bedtime can help this and they do make bedtime teas. Some people find Valerian root helps sleep too, I have several friends who use this for sleep and anxiety. Hopefully those are some things you can try during your transition off Cymbalta. You will do fine! Although heat is bothersome, sweating a few times a week is a great way to detox the body and since our bodies are fighting so hard, it needs our help. If you chose to sweat somehow, I encourage you to ease into it. I have a Far Infared Sauna and am finding it is helping. I am however EASING into it. Cheers and Happy Healing! |
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elaine |
head zapping anyone? | ||
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Hi,
Ir's so good to get all your comments. I had a good night's sleep because I took an Advil PM. I just don't like to take it too often. I,too, often think that inflammation is a factor. I just took some magnesium to add to my calcium. Every one is different and I have tried to drink green tea and have tried ginger and they make me sick. Anxiety is a big factor with me. Some days I'm really good and recently went 3 weeks without Ativan and then thought I would not need it again and then the anxiety struck again. I'm back to taking 1/4 or 1/2 of a .5 two or three times a week (which isn't much). I think when I have a good day I get excited and then when the bad happens it makes it worse and I get anxious. I do think it is part of the WNV and also the hypoglycemia because sometimes " it just comes over me." The heat is also a factor. I would like to sit in the sun for a bit to get Vit. D (we had some sunny days) but the heat was hard on me and I even had a little itchy skin after that. I may have to stay inside a lot this summer when it gets to be over 100 degrees here. I do better in air cond. then havine the heat go on in the house. Elaine |
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elaine |
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I forgot to comment about honey.
I was taking locally grown honey in my oatmeal every morning, and I feel it really helped me with my allergies. Since I always feel sickest in the morning, and honey turns to sugar, I have stopped for now. Elaine |
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