Georganna
Posted , 5 users are following.
I developed shingles the end of September 2016...that was one and a half years ago and I still have a burning, itching, almost painful type feeling constantly from nerve damage. It is on my left back shoulder. I am so thankful that it is not my face or eyes. When I first got shingles I was put on medicine for the virus right away. They were really ugly looking at first...and stretched around to my right breast. Now the virus seems to be just on my back right shoulder and its a little red there with occasional small blisters and if I rub my fingers along it ... it feels a little rough in that area. I had so hoped by now all of it would be gone. (By the way...I did have the shingles vaccine about 6 years prior to getting shingles).
I have had the most horrible brain fog, dizziness, drugged feeling, fatigue, hard to focus, anxious, shakiness feeling since all of this began...and it still continues to this moment. I am taking no medicines...only some vitamins. I have essential tremor and have had it all my life. It's hereditary and my hands shake and always have. My doctor was giving me medicine for that before the shingles began...and before I had two episodes of slight vertigo (maybe due to the shingles?) and at that time I asked to stop the medicine for my hand tremors so as to try and figure out what was causing what.
I see a neurologist and he just recently sent me to a neuropsychologist. I have had a brain MRI and thankfully everything was normal. I have also been to an ENT and a balance center ... followed up by balance physical therapy...because the ENT thought I maybe had an inner ear problem...causing the slight vertigo dizziness.
I myself think all of my brain fog, drugged and dizzy feeling etc...could be caused by my shingles. I did not realize until this morning, after reading other peoples blogs that I am not alone in this thinking!
In three weeks I am suppose to start biofeedback training with my neuropsychologist.
I am 67 years old and have been very healthy until one and a half years ago. I take no medications. I feel very blessed...but I now have this awful brain fog, drugged, dizzy, anxious, feeling that is causing me to feel somewhat depressed...and I so wish it would go away! I fight to push myself to get thru the day and do the things I have always done. I know I could have something far worse. I just keep wondering if I will ever feel my normal self again!
0 likes, 7 replies
Merry19451 georganna53373
Posted
Georganna,
I am so sorry you have the "brain fog.". I am assuming your neurologist has excluded other possible causes, and has done blood panels to rule out thyroid disease, diabetes, and excluded cardiac and pulmonary causes, and has questioned you about sleep apnea.
Has he done Vitamin levels, specifically Vitamin D and B12, as it is difficult to absorb those two Vitamins as we age. Often, at our age, Vit D needs oral supplementation, and B12 can no longer be absorbed through the gastrointestinal tract and needs a monthly injection. I am 66 years old, BTW.
Have you been placed on either
Neurontin or Lyrica for the chronic pain and itching?
I am on Topiramate, which has in certain people, less "doping" side effects, than the other two, for PHN, peripheral neuropathy, and migraine prophylaxis, and it helps markedly.
When you have chronic pain and itching, you have impaired sleep, and then have brain fog. Believe me, I know that horrible feeling from severe undiagnosed food and medication allergies and severe back pain, now all diagnosed and treated with great relief.
I used Doxepin for the itching for two years, until I figured out I was allergic to Sulfites and Nitrites in food, including seasonings, and many fruits.
Vitamin D is essential for your immune response, so definitely get that tested.
Also, Google High Lysine Low Arginine Diet and Herpes Diet. You might find that by eating a diet high in Lysine, low in Arginine, the Herpes Zoster-Shingles PHN might slowly diminish.
My Vitamin D was 14, and I started daily supplements. I also eat a Mediterranean diet, but excluded foods high in Arginine ie nuts and legumes.
My recurring Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye has decreased to every six months. I am a Nurse Practitioner in the States.
Best Wishes
Merry Juliana
georganna53373 Merry19451
Posted
Good morning Merry! I was so surprised to see how fast you responded back to me the other day! Sorry it has taken me awhile to answer.
I could tell right away that you are a nurse. I am not... so I will do my best to explain things.
My family doctor did do blood work about a year ago...and then my neurologist followed up with more blood work about 5 months ago. My vitamin D level was down somewhat so my family doctor increased my supplement. I had it checked a couple of months later and it was back to good again. My thyroid levels seemed to be ok.
Right now I am taking Vitamin D 2000 IU and Vitamin B complex and a Multi Vitamin/mineral once a day.
I am taking no other medications right now.
I really have not been questioned about sleep apnea. I have had one visit to a neuropsychologist and my next visit is to do some type of biofeedback...a two hour visit...and maybe he will delve into the sleep apnea thing? I have never done any of this type of thing before and am reluctant...but my neurologist says he will know better how to treat me once I complete my visits to the neuropsychologist. I guess I am willing to try all of this because of how horrible I feel everyday.
I think I mentioned before that I am blessed to have always been healthy ... guess I still am ... but it seems that these shingles are throwing a wrench into the gears! BTW...I am 66 like you...not 67 because my birthday is in May...should not be saying 67 already! lol
One of the huge problems I think with doctors trying to treat me is that I am so allergic to many medicines. I know that I am allergic to Sulfa, Mefoxin, Penicillin, Keflex, and Gabapentin.
I was prescribed Acyclovir 800 mg when I first had the shingles rash...October 2016. If I remember right I did not have to take it for very long.
I tried Primidone 50 mg for my essential hand tremors...I took it for like 9 months...it was helping the tremors...but I felt horrid taking it. Then my doctor prescribed Tramodol-Acetamyphen...I really could not tolerate it. The last medicine I was taking was Propanolol Hcl 10 mg. ... for my hand tremors... I took 2 of these a day and I think I took them for around 4 months. I had this terrible "brain fog" etc...when I was taking it...but I continued living that way because it really did help my tremors...and the side effects were considerably better than the other drugs I mentioned.
In the summer of 2017 I had two episodes of vertigo...not horrible vertigo like the spinning people describe...but the bathroom vanity moving from side to side and me wondering if I could make it down the hallway and back to the bedroom. I went to a balance center for this condition and did physical therapy because an ENT thought I had an inner ear problem. At the time I got the vertigo I told my doctor I was stopping the Propranolol Hcl 10 mg...because of how dizzy and brain foggy it made me...I just wanted to try and figure things out. And now I really think maybe all the weirdness I thought the Propranolol was causing was actually my continued shingles nerve pain? As of yesterday I have some blistering in my shingles area. One and a half years
later.
I have printed out your first correspondence to me and I am planning on researching some of the ideas you gave me.
I have been wondering for months now if I should give Lyrica a try.
I think I should hold off until I am finished with the Neuropsychologist ... because the medication might interfere with his testing?
Well got to go ... my husband would like some help with breakfast! lol
Take care, and have a great day!
Georganna
Merry19451 georganna53373
Posted
Georganna,
When I am talking about brain fog, I never mean to discount or marginalize the brain fog people experience with Shingles. It is always important to rule out other causes that may be causing the symptoms, however.
Lyrica causes many CNS symptoms, BTW...
I am on propranolol 160 mg daily for cardiac arrhythmias and hypertension, and tolerate that dosage well. I cannot go any higher without experiencing brain fog and depression. My identical twin cannot tolerate any beta blocker, at all.
I am extremely sensitive to many medications causing CNS depression or brain fog, so I understand the dilemma.
Topiramate might have less side effects than Lyrica, BTW, but it is "off label use. " I don't have brain fog on it, but my twin did.
Good luck to you and your search.
Sometimes what you may have abscribed to a medication could have been brain fog, or vice versa. The only way to tell is to resume the medication for a few weeks.
I am severely allergic to many medications and foods, and narrowed down the allergies in this manner.
Best Wishes
Merry Juliana
yogi12221 georganna53373
Posted
Welcome Georganna,
I hope you feel better. I do believe that the dizziness is related to the shingles. I had dizziness and brain fog though neither lasted very long, thank goodness. Like the first week of diagnosed shingles, I'd look up to the ceiling to see if the ceiling fan was on but I'd look in the wrong place on the ceiling for the fan. Little things like that happened a lot.
georganna53373 yogi12221
Posted
It's good to know that it did not last long for you! Thank you for reaching out! I did not know until I found this forum that other people are experiencing this weirdness...and probably due to the shingles virus! I hope everyday that this will just go away...and at the same time I realize there are far worse life threatening things I could be plagued with! Take care!
Georganna
Jane1618 georganna53373
Posted
I am still having trouble with my right eye 2 years after getting shingles in it , I got it in my eye, on ,my forehead and head, I have itching every day in my eye and all over my eyelid, and on my forehead where the rash was, it drives me mad! No creams work to stop the itching and it's such a sensitive area. Every now and again my eye flares up and the rim looks pink and my eye looks a bit cloudy. Luckily I am not the sort of person to get depressed but I do suffer with anxiety, and I have never felt the same as I did before I had shingles!! I don't think this is ever going away!
georganna53373 Jane1618
Posted