hey clancybenjamin,
I singled you out, because, i agree that our symptoms are so very similar. I too feel numbing, swollen, pain it a LOT in the neck and spine... it's truly debilitating.
I also find I am worse in the dark.... and have come to the conclusion that I feel worst under fluorescent lighting like a costco or wallmart.
Finding out this was a tumour was surreal. As surreal as one might expect. My butt could cut steel with how tight it clenched up. But to your statement of the negative being good news.... this hopefully is an ends to a means.... I feel horrible I have a tumour... I am delighted that there is a possible answer. TO THOSE OF YOU READING OUR POSTS, THAT is how horrible and desperate we all feel.
Prolactin was the excessive hormone. It doesn't effect much other than sex drive and fertility in men... but I am hoping the endo is able to balance this.... and as a result... fixes all my issues. I'll deal with this tumour BS after. so far i've only done a test for prolactin... but there could be others.
The reason i'm asking about the eyesight (peripherral) is that this benign mass's most general concern (next to being so close to the brain) is that it can grow large enough to cause peripheral eyesight loss due to it putting pressure on the optic nerves.
So far (with what little info as I have.. and at this exact point in time) this tumour seems managable through meds and monitoring... so don't feel too bad for me. It could've been much much worse. I'd be foolish to think it can't get worse still. But right at this moment, i feel lucky.
I appreciate the concern though bruther.
Good luck to you guys...and to me.
mrfeelbad
hey clancybenjamin,
I singled you out, because, i agree that our symptoms are so very similar. I too feel numbing, swollen, pain it a LOT in the neck and spine... it's truly debilitating.
I also find I am worse in the dark.... and have come to the conclusion that I feel worst under fluorescent lighting like a costco or wallmart.
Finding out this was a tumour was surreal. As surreal as one might expect. My butt could cut steel with how tight it clenched up. But to your statement of the negative being good news.... this hopefully is an ends to a means.... I feel horrible I have a tumour... I am delighted that there is a possible answer. TO THOSE OF YOU READING OUR POSTS, THAT is how horrible and desperate we all feel.
Prolactin was the excessive hormone. It doesn't effect much other than sex drive and fertility... but I am hoping the endo is able to balance this.... and as a result... fixes all my issues. I'll deal with this tumour BS after.
The reason i'm asking about the eyesight (peripherral) is that this benign mass's most general concern (next to being so close to the brain) is that it causes peripheral eyesight loss due to it putting pressure on the optic nerve.
So far (with what little info as I have.. and at this exact point in time) this tumour seems managable through meds and monitoring... so don't feel too bad for me. It could've been much much worse. I'd be foolish to think it can't get worse still. But right at this moment, i feel lucky.
I appreciate the concern though bruther.
Good luck to you guys...and to me.
mrfeelbad
yes i have andf it felt awful. i kept attributing everything to am i feeling apathy, deja vu....bl
Wow, i'm amazed with this topic, i feel the exact same things that many of you have, i was really confused about this, but i believe there is something in common with most of us that is causing this, maybe its not even the same cause, but sure causes very simmilar symptoms. My symptoms are the following:
-neck stiffnes/disconfort (its really hard to describe, sometimes it feels like the neck can't support my head right, and i feel much better when lying down, or just supporting my head somehow,like with my hands). I do feel pain in the neck and lower part of the head sometimes, but its not constant.
- dizziness/foggy head (altough i do feel vertigo ocasionally, what i feel is harder to describe, i feel somehow off balance and my head feels heavy, but its very subtle, yet it me feel like i'm not at all "fine" )
- pressure on the back of the head, lower skull and upper neck
-Nausea/fatigue (for me, this is the worst, my anxiety probably plays a role on this lately, but this and the lack o apetite are making my life really miserable)
Sometimes theses symptoms are mixed and is very hard to describe what i'm feeling, wich i think is way people don't really understant how awful it is to feel this way, like many here i feel like i can't function like i should and i feel very frustraded most of the time. I have also experienced some other things that are said here, like, i feel shaky and i have this buzzing feeling on parts of my body sometimes, some muscle twitching, a little lack of coordination and i don't see well in the dark, i just feel really unconfortable, i do wear glasses but i feel this even when wearing them. I was sort of ignoring this lasts symptoms, thinking it was just in my head, but i think maybe its relevant afterall.
I'm a 20 year olf female and the first time i felt this way was last year in july, after i had a really bad cold,i was starting to feel better and i just woke up and felt really dizzy, i went do the doctor and he said it was because of the flu, a week later i started to feel better and this went away. Then, this november one night when i couln't sleep i started feeling nausea and felt like this again, also a week later the nausea passed, but this feeling continues until today, 4 months later, with times where it felt a lot better and time where i felt nausea again. I delayed going to the doctor thinking it would pass like the other time but it doesn't seem to be the case, a little before i felt this way again i had donne blood tests and everything was fine. I also should say that lke many here i spend a lot o time in the computer, looking down (i blame my horrible chair) so maybe there is something there. I'm doing an x-ray of my cervical spine tomorrow to see if there is something wrong there.
Sorry for the long post or bad english (not my native language).Anyway, i'm hoping this isn't anything too serious, i'm really scared now and i'm almost considering not going to college this semester, as i live really far way and have to take 3 buses just to get there, and doing that while feeling this way is difficult. Hope you all get better, i know how awful this is ;/
Hi Bih,
Thanks for your post. I think it helps us all to get and give a little feedback on the boards... its always beneficial to compare experiences. I know your symptoms sound a lot like mine. Couple quick questions... do you have any additional muscle or joint pain? Blurred vision? I started getting the symptoms pretty bad about July of last year... then the back, knee, and joint pain started pretty bad about 3 months ago.
To everyone... Mrfeelbad, Karen... my doctors are zeroing in on a rare disease call Systemic Mastocytosis. It happens to fit our symptoms and is so rare that most doctors overlook it. Just food for thought in case you want to look it up and ask your doctors.
Mrfeelbad, any news or updates on your situation?
Hi, yes, a week before i started feeling this way in november i did felt pain in both my knees, i didn't do anything different from the usual, it was a really strange pain like i had never felt before, almost like if they were loose, eventually it went away and i have felt it one or two times since, but i remember thinking it was really strange. About blurred vision, i don't know, i already use glasses but i have been feeling like i need to get them donne again, so..maybe.
Also, just for an uptade, i tried to sleep with my neck in a better position as someone already suggested here, and today i do feel a lot better, the weird feeling on my neck is not gonne, but its better then most days.
I'm a biology student, so i definitely want to get to the bottom of this...i think this disease you mentioned is very interesting, it certainly fits for me,as a few years ago i developed an alergy that leaves big red itching lesions on my body, wich the dermatologist said it was normal, but i still get worried about it, also i have allergy on my eyes, they get red for no reason, and the oftalmologist can't seem to explain why, at that time i have did allergy tests and they all came back negative. I think maybe could be something like that. I'm still in the beginning of doing tests to figure this out, but i will keep this in mind, thank you.
hey clancybenjamin,updating.the medicine my doctor put me on to try to shrink my tumour SEEMS to be working.... at least the side effects are:)i see an endocrinologist this monday and have made another MRI appointment to take a closer look at this benign tumour. i pray it will have shrunk.
i did not want to mention my progress with this healer guy in port angeles, until i had something more concrete for you guys... but you and karen are suffering so badly right now, that i will.
a few posts ago i mentioned a doctor on the east coast. i spoke w him and he referred me to a person on the west coast, who could help me. I've seen him twice.their method's are different. After a month on the NATURAL treatment MY UNBALANCE IS STILL THERE as is my uncoordination and slow speech. HOWEVER, the brain fog, head pressure and the smell in my nose is fading... not gone, but noticeably better. i am feeling noticeably better overall... except the balance issue seems more acute... maybe because the fog is lifting.
as i mentioned, his methods are out there a little... but his treatments are helping.i will actually recommend him to you and karen. BUT before yous spend money on a plane ticket and hotel... read his book: bugs in my brain, poison on my plate. google his book and you'll get his name.
i do not know if it's HIS treatments or this drug i'm taking (to shrink my tumour) but i feel a lot less sick. NOT CURED... but i feel better. his approach is nutrition driven. not kale and lettuce... but black currant oil and fenugreek. it took almost 2 years to getme this bad... it will take time to undo. little by little.... i can smell a lot better. i do not have half as much head pressure. brainfog is all but gone. tightness in my neck is better. i still have a lot of symptom's to try to fix. i do not know if this will work. but i'll take the small victories.
i believe now that our ailment is hormone unbalance. both natural and standard treatments i am on are fluctuating my hormones. and i'm almost positive that hormone unbalance is what's messing with us (as others on this forum have mentioned too) i'm a little worried that others have seen an endocrinologist and have not been cured. but i remain hopeful that this endocrinologist is my key to ending this nightmare... if he don't work... i'll carry on with this healer in port angeles. slow and steady wins the race.
mrfeelbad
I am on Cymbalta, 20 mg 2x per day, for my headaches. I stopped the Migra-Eeze and it did not seem to help at all. It has been 4 weeks now for the Cymbalta. I was on vacation last week and was headache free for one marvelous afternoon. Today is Monday, and I am also headache free, but I am still having issues with the back of my neck and shoulder area feeling tight and achy, as usual. I am still dizzy when bending over, getting up, etc. They said the dizziness was from migraines, but nothing I have taken for migraines has taken care of the dizziness. I still have the issue where my muscles shake upon exertion. No one has addressed that at all. I am seeing an internist tomorrow at Mayo for yet another opinion. I am also scheduling another non-Mayo neurologist for another opinion. And my ENT visit next month for my dizziness, which could be caused by a dihesence of the semi-circular canal, which showed on my ER CT scan in December. I have had extensive hormone testing and am on bio-identical hormone replacement therapy for the past 3 months. I feel no different, even though most recent labs show that hormones are much better. I am still doing weekly acupuncture even though that does not seem to help either. It's cheap, so I keep it up because it does not hurt to have it done. I do not have the symptoms of Systemic Mastocytosis, but thanks for sharing the information. It never hurts to review and check. BIH, you and I appear to be suffering from some of the same symptoms. Karen from Arizona
It is so good to hear about others with the same kind of symptoms as me. I have been suffering with a muzzy head for the past 15 years. It lasts sometimes for months then I may have a few months relief from it. Lately it has got worse as I now have a ringing, high pitched sound in my ears ad blurred vision and the muzzy head has lasted for a few months this time with no respite. It really gets me down. I find everything so much harder due to feeling confused when it flares up. I dont want to socialise and feel very tired. I also get on occassions a very wierd feeling which is very hard to describe it is like everything goes very fast around me for a few seconds and I feel like I am falling. I have seen so many doctors and tried various pills for depression and anxiety. I am neither anxious or depressed but no matter how much I tell them this they do not believe me. I take the pills to humour them unless they make my symptoms worse. I do have a neck problem and do think it is all down to this. I have asked if I can be prescribed somehting to loosen my muscles just to see if f it works but they will not even try it. I am so sick of feeling like this and sick of doctors fobbing me off with pills I do not need. I appreciate that it might be hard to diagnose but you would think after 15 years someone would have done something for me. It is so difficult to describe it to anyone other than it is like being drunk but without the happy feeling. Doctors really dont seem very interseted though because it is something they cannot see and do not understand. good luck to you all and I really hope we can all get to the bottom of this as feeling normal again would be amazing. No one should have to suffer like this and if doctors could actually experience it theey would make damn sure they found something to ease the symptoms.
This completely describes vertigo. You may have BPPV, which is easily resolved with Epley's Maneuvers. Has your doctor checked you for this?
Karen from Arizona
Thought I would give you guys an update on how I have been feeling.
Been on Cymbalta now for 6 weeks (20 mg 2x per day). I have to say my headaches are much better, although not completely gone. I still get them, but they are short lived and not as painful. The normal dose is 60 mg per day.
For the 1st 4 weeks on this medication I had chronic diarrhea,no appetite and a couple of panic attacks. That is now gone. I want to eat everything in sight that is junk food. Now I have a lot of muscle pain and stiffness in my neck, shoulders and back, however, I would trade the muscular pain for the headaches any day of the week. I would have to say I am 50% better, which is a HUGE improvement. I feel like I am getting a little bit of my life back. My anxiety is subsiding a little because the headaches are subsiding. I still feel like I am age 90, not 49.
I am still on hormone replacement therapy, Migra-Eeze for my headaches, and a supplement pack, including Melatonin at night. I have started Yoga, I do daily meditation and also vestibular rehab for my dizziness. A Physical Therapist has given me some exercises to strengthen my neck and back. I still do not sleep well - I have vivid dreams. I usually take a 1/2 to 45 minute nap sometime during the day. I tried to stop the hormones and within 2 days I was having horrible elevator-drop dizziness, so I continued the treatment.
I see the ENT next week for the dehiscence (hole) in my semi-circular canal. The only fix for that is serious surgery.
Karen from Arizona
I am a 43 year old female. My health is pretty good (for my age). I take Concerta (27) for ADD. I also take Advil PM once nightly to help me go to sleep. Other than that, I take ibuprofen when I have a headache or cramps (which is occasional).
Three days ago was the onset of my vertigo. I was sitting at work and it just came on out of the blue. I had not been recently sick, I had not had any recent injuries. I do not have a history of ear problems or infections. I used to have chronic sinusitis, but after I quit drinking colas, that went away. I do not have allergies (except to furry pets, which I don't have any). My diet is pretty healthy...mostly lean proteins, fresh veggies, greek yogurt, and lots of water.
The vertigo increases slowly and then decreases slowly with no obvious triggers as to why it is worse or better at any particular time. Nothing seems to make it worse or better. I can stand up quickly, move my head side to side, etc. and it just stays the same.
I also have a constant feeling of nausea, but it doesn't keep me from eating (I wish it would so I could at least benefit from this stupid condition with some weight loss).
I have been to the dentist recently, so I don't think it is related to my teeth as some have speculated. I have no teeth pain.
I do get tension headaches and I tend to clench my teeth or tighten my neck. I constantly have to remind myself to relax my shoulders.
At this very moment, I am having extra tightness/tension in my left neck and shoulder.
After my second day of vertigo and nausea (plus fatigue), I went to the Medi-center. The physician diagnosed me with "Labrynthitis" which is just a general term for vertigo. She also told me to take motion sickness pills.
The next morning, I had extreme fatigue...so much so that I called in sick to work and slept until 11am. That afternoon, I called my chiropractor and went in for an adjustment. He got a pretty good crack on one side of my neck (the kind that makes you go "Whooooaaaaaaa!") Immediately afterwards, I went for a deep tissue massage. I was hoping that one or both of those would help my vertigo, but it was still there this morning.
A co-worker told me that someone she knows was just having issues with vertigo and said she took the motion sickness pills plus Claratin and it helped. Eventually hers went away. So, at lunch I bought some Claratin (generic) and took one. I will see if it helps.
As the day is progressing, I am feeling more and more fatigued.
Reading everything here makes me worried that my symptoms may not go away anytime soon. I hope I am not as unlucky as all of you here, because to feel this way everyday for years and years would be awful!
This evening when I get off work, I am going to go home and try doing my PM Yoga DVD and see if that helps. We were supposed to go hiking this weekend, so I will see if I can ignore the feelings enough to get out and get some exercise and sunshine.
Basically, I feel like I have a constant hangover....everything spinning, nauseous, and fatigued.
Vestibular Disorder?
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mafixit, glad to hear you're doing a touch better. you were really suffering for a while. i
just wanted to make a final post, as i'll be reading other sites with people who share my condition(pituitary adenoma). it's been approx two plus months since my tumour diagnosis. i've been on meds to shrink the tumour and balance my hormones. I go for another MRI to see if this treatment is working at the end of this month.
I still feel symptoms : imbalanced, uncoordinated, weird smells, fatigue but the hormone balancing is changing SOMETHING... and some change is better than none. Some improvements: walking(straight on a flat surface) brain tingling, sore neck and shoulders, brain fog are all gone (for the most part.)
Mine is a relatively common tumour.. but hey... a brain tumour's a brain tumour. I will always keep fighting. Although I feel lousy about having this friggin tumour, (believe me I do not want this tumour bulls**t).. compared to others... i feel blessed. 43 years of living a super fulfilled life is not bad.
I've also kept up with that healer from port angeles. I believe his treatment is also helping.
Looking back in time now, i feel as though my symptoms started further back than i originally had thought. I believe it will take time for the symptoms to subside... but i don't feel like i am going to die tomorrow anymore. Knowing the cause was half the battle for me. I had to know my enemy.
Although I am not feeling completely normal yet... i feel like i will feel "normal" over time. Check your hormones (imo). Even slight hormone imbalance can really mess you up (according to my endocrinologist. ) Hope you all feel better one day. Godspeed to us all.