okay clancybenjamin...
so things sound very very similar between us... except I am older and out of shape.
Two last questions.. is your "core" super duper unstable (like it is 'SUPER WEAK' and moves around when you are standing, peeing, kneeling on a bed? and have you ever had a major back injury?
Update: My neck and shoulder tightness.... is pretty much gone (i thought the dizzies would follow... but they have not at all) my feet feel a little less sore, I feel a little less lethargic. seeing the korean acupuncturist again on tuesday this week. Also getting results for the tests I did for thyroid(t3, t4) and heavy metals, back this week. I will update.
Hope you guys are not losing it as bad this week.
Update on me.
I have been on bio-identical hormone replacement therapy and a vitamin/supplement pack with a high dose of Vitamin D3 for 45 days now - I don't feel any better.
I gave up fighting the conventional doctors and started the Nortriptyline (Pamelor) suggested by my headache neurologist at Mayo. I have been on it for 1-1/2 weeks and my dizziness has increased. My anxiety level is still pretty high. They say this takes 4 weeks to start working. Ugh.
I still have intermittent twitching all over, especially when I lay down. Had a 3-day long migraine last week - which seemed to be triggered after a light workout at the health club.
I am on Arthrotec for 30 days to control the headaches until I get in for my second round of Botox next month. Not sure why we are doing a second round when the first round did not work. The painful headaches have settled down somewhat with the Arthrotec, but the pressure in my head is still there and sometimes it gets pretty bad. It aches at the base of my skull, the trigger points behind my ears hurt, then it feels like someone is squeezing my temples and ends up in my forehead between my eyes. Also if you press anywhere on the back of my neck between the base of my neck and the base of my skull, I get more dizzy.
My left leg, hip and left arm are still feeling shaky. Its hard to describe, but I get this buzzing feeling in my left front hip and thigh.
I am still not sleeping through the night. I was told the Pamelor would help me sleep and the nighttime dose of progesterone would also help me sleep. My sleep is just as bad as ever.
Still trudging along looking for an answer. I thought for sure the hormones were playing a big part. It starting to look like that wasn't the answer. It's hard to take this Pamelor anti-depressant when it makes me feel worse. I have a hormone doc visit and another PCP visit next month. The Mayo Clinic retired my headache neuro, so I have to meet the new one when I go for the Botox.
Karen from Arizona
I may have spoken a bit soon on the inhaler. My symptoms curiously come and go from 80% down one week to 20% down the next. It seems that when I first started taking the inhaler it may have just been coincidence that I was starting a down week because I got hammered the last two days. Curiously my Gastro told me to avoid foods that some people are allergic to (without testing me) ie nuts, wheat, eggs, dairy etc. As I was feeling better I ate a peanut butter sandwich on wheat bread the night before my symptoms lapsed.... I may be grasping at straws here but as a science major i'm trying to find patterns which have thus far eluded me. I will avoid Gluten like my life depended on it for the next few weeks and see if i improve for any amount of time. One thing to note was that I was tested for celiac about two years ago and it came back negative, however that was before the worst of my symptoms started. Mrfeelbad, im not quite sure what you mean by my core "being unstable". I will tell you this, when i have no vision i'm all over the place as far as balance. Turn the lights off and i'm likely to walk into a wall even though i know where i'm going. Night driving home from work is tough even though I just had my vision re-tested at 20/20... its like i have to concentrate extra hard to not drift in my lane. I believe i already mentioned the fibromyalgia in an earlier post and i am noticing a lot more random aches and pains throughout a given day... knee, back, arms, neck... its a dull pain like i had been working out really hard the day before and i have that muscle ache. It lasts anywhere from an hour to a day and has no apparent trigger. Many symptoms including numbness in the body, brain fog, tightness in muscles, etc are from Fibro. However, after researched the condition i think it in and of itself is just a category of symptoms rather than its own disease. Having said that, I would like to find a root cause. To my knowledge i have never had a back injury of any sort. You'd never know it with the upper and lower back pain i have now... One thing i'm curious about is that when i am at my worst (symptom wise) I have a weird taste in my throat. Have you ever noticed anything like that? Also, when you first noticed the symptoms did they creep in over time or hit you all at once one day?
Clancy,
1. Removing Gluten from your diet is a good thing either way, but know that it takes several weeks to a few months for your system to start reaping the benefits.
2. I also tested negative for Celiac, but when I had Food Intolerance testing done, my intolerance to Gluten was severe. Since I have been off gluten for several months now, I can tell if I eat something I am not supposed to within a few hours - mostly gastro issues.
Check out the Paleo or Primal eating lifestyle - Google them. These will eliminate most of the stuff that causes issues today, such as wheat and gluten. Grains can cause inflammation throughout your system, which may be contributing to your Fibro symptoms. Maybe consider a food intolerance test. Intolerance is different than allergies. I have both. Foods that I am allergic to show up fine on my intolerance test. Allergies are immediate. Intolerance can hurt you over time.
You should eat like people ate before there was farming. Think about the hormones they put in the cattle feed and you subsequently ingest. Think about the way they have developed crops to withstand disease and the pesticides you subsequently ingest. I try to eat grass fed beef, cage free chicken and eggs, wild caught fish and no flour or sugar products. There is so much good food out there that is good for you and it may help your aches and pains.
If nothing else, it helped me to drop a few pounds without much effort.
Karen from Arizona
Karen, In all my blood work the only abnormality they have ever found was also low vitamin D levels. Again, i think this is more of a symptom than a cause. I also spoke with a specialist who noted that in the set recommended levels that vitamin D is set at too high of a bar.
Have you had cortisol levels checked? (apologize if youve already stated this).... I get headaches in the same area now (NEVER had headaches my entire life until 7 months ago) and completely understand the "buzzing". I do not have any trouble sleeping though.
Thanks for the advice on the diet. I will definitely be looking into alternatives.
Clancy,
I also have low Vitamin D (even though I live in the Vally of the Sun) and am on a D3 supplement on the advice of my hormone doc. I did have my cortisol checked (through saliva) and it was elevated. Hormone doc said this was significant, but Mayo doc said my test was worthless and ordered another urinary cortisol which came back in the normal range, so I am not sure what to do with that info now. I will leave that up to my hormone doc.
I am working on a second opinion with someone who will look at the whole picture and reports from all my docs. It is a new service my husband's company offers. They take ALL my records, send them to one internist who reviews my case and then they forward me on to a specialist based on the recommendation on the internist. They will tell me if they think my diagnosis of migraine is correct and if my course of treatment is the best for me. I cannot wait for their review.
In the meantime, here I sit, on an anti-depressant that makes me feel crappier, and has other side effects. I am really thinking today about stopping it and going back to just the hormones fpr now. My dizziness is worse on this Pamelor. And it feels like my head is filled with water and is going to explode. Not a lot of pain, mind you, just a dull ache and pressure.
Karen from Arizona
heya clancybenjamin,
your email is really helpful.
I do have a WEAK WEAK core, but after reading your post, I will say my core weakness is not what is causing my unbalanced feeling. Also... i do have a bad back... but you do not, because you and i are so similar, i will be so eager to blame nerve damage in my back either. Thanks for your info. Really helpful.
My symptoms creeped up on me gradually over 2years(now that i think of it). I first noticed having issues going down a flight of stairs around 2 years ago. I had to hold onto the handrail all of sudden. I just thought i was grossly out of shape.... nothing else. i really didn't question much until i had a wipeout on my motorcycle.
It was at that time that i really started noticing that i was super shaky and unbalanced driving at slow speed. I really started to question why this was happening to me, and I really started to pay attention to how i was feeling. I knew something was up.
I have not encountered the taste thing... however i have been getting weird underlying smells in my nose.
Do you have eczema near/in your ears? liquid in your ears? had a concussion? have allergies which cause sinus issues? have taken Flonase or any other nasal steroid for long periods of time? Shortness of breath? slurred speech? were you ever a smoker?
you and i are having VERY VERY similar symptoms.... but it doesn't seem like we have a lot in common to this point. I have two tests coming back this week... i'll keep you posted.
I still have a big MRI coming up to discount MS..... manoman.... that's freaking me out a little.
we'll figure this out one way or another dude, stay strong. We'll all figure this out... mafixit... sorry you sound like you got it rough right now. stay as positive as you can... we all know... we all know.
mrfeelbad
Has anyone considered all of this to be Vertical Heterophoria (misaligned eyes) to be causing all these symptoms??
ther was an earlier post about this. I was going to look into it right after i exhausted thyroid, accupuncture and heavy metals.
I tell you what... the internet might scare the sh*t out of me when i read it sometimes... but i would have never even thought about my eyes being a possible reason for my condition. thank for you post and suggestion pegalos. :)
How often are you infront of your computer / smartphone / tablet?
Just search Vertical Heterophoria and the top result should be linked to Vision Specialist of Birmingham.
After reading through it, its pretty convincing... I just filled out their questionnaire and waiting for their reply.
In a way, i hope this might just be the issue since it can be easily treated by putting prizms into your eye glass lens.
Hoping for the best!
this is not a reply to anyone in particular.
I too have a plethora of symptoms just like most of you, funnily enough though, sometimes its hard to describe them accurately, maybe thats the head fog part of it.
My problems started 5 years ago, i cant remember any events or illnesses that could have caused this issue.
usually my symptoms come on when i am looking up or down for any length of time, or if i read for a long time, computer screen or paper, i also have trouble in stores with bright lighting, not the brightness, just that it brings on the symptoms.
I have had sinus surgery because my ent thought it may be the cause, maxillary polyp removed, deviated septum fixed. didnt work for this though. i also had my uvula and tonsils removed about 4 yrs before this started, the snoring changed tone, i purr now. I think i am a logical person and i tried to figure this out, and i intially had the idea that it was my eustachian tubes, they control the inner ear pressure, and i noticed that my ears hadnt "popped" for a long long time, and when i tried to hold my nose and blow they still wouldnt pop, my ent did all sorts of hearing tests, vestibular tests and said that they are working fine, i argued that they may be working when they are blowing air into my ears but not when i am in my everyday mode, she didnt like this, she also said it wasnt the bluetooth i was wearing causing it, and after the surgery she said that maybe the bluetooth is causing it, she is a good doctor, but like us all, she cant know everything, dizzyness, in all its forms, can be the most difficult ailment to put a diagnosis on.
i have been getting some tx by an osteopath and she managed to cause a sinus infection, which didnt upset me, i thought that she is stirring it up so maybe shes getting somehwere. Anyway, my neck has ached for years but not enough to really bother me, she did an xray last week and i have a straightening of the cervical spine, kyphosis its called (dont imagine me saying that in yodas accent). i also have some issues with c5-c7 inclusive, either DDD or possibly herniations, i got new glasses recently and they havent changed anything except i do look rather snazzy in them if i dont mind saying so myself ;p. i get more definitive results this thursday then probably an MRI, but this thought did cross my mind. i thought it may be my eyes at first, then i realised that it may be because i am keeping my neck in postions to read on a screen or a book, or when i look up at work to grab a file, or look down, maybe its compression due to a bulging disc or a herniation, also, i did read somewhere online (so it must be true), that if you have a stenosis or other problem at c7 it can cause balance problems due to either nerve impingement or even decreased blood flow.
i liked the lysine and vit c idea and am going to try that, also the mega dose of B12, i will try both together.
this is delibitating, i am an otherwise healthy 47yr old man of English origin living in Florida, doing a job i love and have a girlfriend half my age, so depression is not the answer. I also just bought an over the door cervical traction device, i will report back on this, unless i kill myself with it, then you wont be hearing from me again, if you do then either ghosts really do exist or you are mad!.
i may jest but i am as mystified and upset as you all about this, why couldnt we just have a bad finger? we could just get it removed! maybe you should all get a neck xray done, they are cheap and informative.
thanks for all of the great information posted here, also about the thyroid issues.
Google atlantotec. This might get you on you way to relief.
interesting surffenomore... do you know first hand if this worked on someone? thanks for the post. it goes on my list :)
got my xray results, moderate degenerative disc disease in 2-3 and 6-7, severe in c4-c5 with bone growths, could be the osteophytes that are pressing on nerves and causing it all, MRI next
New Mayo headache doc has put me on Butterbur+Ribovlavin+Magnesium for the migraines, which they still believe are causing my dizziness. I was excited to hear an MD at Mayo suggest natural sources of healing instead of heavy duty drugs. According to their clinical trials this combo has been as successful as Topamax for migraine prevention. There are so many drug options available to me, but I don't want to do drugs. Don't want the side effects. The past two weeks I tried the suggested anti-depressant. She told me to stop and try the natural route. Had weight gain, more dizziness, sleepless nights, and more stomach issues and no headache relief. No thanks.
She promises me this is not the rest of my life, that after Menopause I will return to normal. It sure doesn't feel like it at the moment.
Still hanging in there by a thread.
Now to top it off, my hubby has won an all-expenses paid cruise out of Miami Florida in the middle of March. I MUST get better so I can travel. How can I pass this up?
Karen from Arizona