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severe head and neck pain everyday
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whydonttheylisten posted:
Hi - This is my first post. I dont know what to do. I have been dealing with headaches for as long as i can remember - my first mri to figure this out was 9 years ago, still no answers today. I get very bad headaches and 85% of the time my neck is in just as much pain. No sooner are my eyes open in the morning I have stabbing pain in left eye & eybrow area, They also wake me in the night. My headaches are also located on the forehead w/ neck and shoulder pain.Headaches and neck pain last for hours to days. Neck feels tender to touch, stiff, tight, feels swollen, have to turn head instead of moving neck, its very painful and feels like muscles are being pulled apart. No amount of medicine i take helps and ive tried everything & eating habits, ive tried that too. During my period this is even worse (as if it could get worse.) Now I have tingling and numbness in both of my hands that goes up into my forearm & elbow that has lasted for 5 months now. Its all my fingers on both hands but right hand moreso then left - its the feeling of numb, tingles and burns, my fingers also swell up and its hard to make a fist, its hard to cook,drive,wash hair,makeup,use phone,type,write,even using tv remote. I bought the wrist brace for carpol tunnel and it worked at first but does not work anymore.Also same time the hand thing started, i broke out with this severe itching mainly on legs ( no visible rash , no dry skin ) - went to doc & he called it puritis. Its happened only a couple of times, thank God, but when it does its awful feeling and this last time it happened which was last week, i could feel my throat tighten and could hardly swallow, i took the medicine he gave me and it helped but what is causing that ? I went to the doc today armed with all this info i had been journaling. My life is in complete upset. My husband doesnt understand why I am withdrawn, I cant keep up with anything, I cant even concentrate enough for helping my son with homework.My husband is tired of this and I think he is resenting me for it. I tell the doc all this and he says im "depressed & have anxiety" - tells me to take effexor and xanax and that will make me feel better. He said he feels that will make my headaches go away. I told him - Ive been here w/ that anti depression meds and all that and it did not work, those meds did not do anything. Ive been prescribed lexipro,zoloft,effexor,paxil, and nothing made my headaches go away - all that stuff did was make me feel worse w/ weight gain and I KNOW thats not what I need. I told him, yes, Im depressed because of these headaches are ruling my life - who wouldnt become depressed when they wake up w/ headaches ? Who wouldnt be depressed when the doctors wont listen to you ? I went there today and had fasted since 9pm last night and my app. was at noon thinking he might want blood work - I asked him about blood work and he said no to that. I also asked about a hormone test because i have no desire for sex and my headaches are worse during my period and I thought maybe there would be something with that and he said no to that. I was so let down today, again, I held back my tears and barley made it out that door to my car where i broke down crying. I know my body and know what i have been dealing with but I can not name what this is, I cant treat it. I know it is not depression causing my headaches. BTW - the doc I saw today was not my regular doc, my reg. doc was booked but I have gotten nowhere with him either. Doc tells me " i have to treat the symptoms, well, they " treated the symptoms " with my dad. My dad was going to the doc for 2 years with numbness in the leg, walking w/ a limp/gait - they didnt do a head scan up until he had a granmal seizure - then he was diagnosed w/ inoperable cerebri glioma brain cancer Nov. 07. Thanksgiving he was using a cane, christmas couldnt walk, newyears was in hosp. in wheelchair. He passed away Feb 4, 08. Im not saying I have brain cancer, but why wont they listen?
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Jilleann12 responded:
You poor thing! All of this sounds very familiar! (see my post from earlier today with the subject of Topamax & Weight Loss & Pituitary) I get the horrible neck pains with my migraines, that are worse with my periods - to the point that I cannot move - sometimes I just sit and cry. I am on Topamax, Zoloft, Migravent supplement, have changed my diet, have changed my birth control and none of this has helped. I have been diagnosed with a small pituitary tumor, but my endocrinologist says she doesn't know if this is the cause of the migraines - I am waiting on lab results and then will consult with a neurosurgeon to see what to do next. Triptans just make me sick, but the doctors don't want to give me vicodin anymore, even though that is the only thing that has provided relief. My father also passed away from brain cancer, so I can understand where you are coming from (sorry for your loss). You really should consult with another doctor - a neurologist or internist that specializes in headaches and you should have another MRI because of your family history. Have your GP refer you, if you have an HMO - be tough with your doctor! The numbness/swelling in the hands may be because your neck is swollen and cutting off the blood supply to your limbs to some degree - I had a neck injury years ago and this still happens to me periodically when I have neck pain - my arm feels limp and weak. Really hope you have relief soon, Jill
 
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headachegirl01 responded:
I just wrote to someone earlier about getting stabbing pain in the eye and eyebrow. I get that too. Sounds like you might want to check with a neurologist or maybe change physicans. Maybe someone that knows about headaches. Are you on Topamax? I know that you can get numbness in your arms. When I first started taking it I got numbness in my arms from my elbows down on occassion. And still do from time to time in both hands in just the pinky and ring fingers. Weird right?

I just found this post not too long ago. It really felt good. I told my husband about it. And we have talked about it a number of times. I am blessed because my husband does rub my head and has cleaned up "puke buckets" (sorry guys) more than he probably cares to remember. But he gets it most of the time. It is inconvenient and I am sure there are nights where he is alone and wishes I would come out of our room and spend time with him. I also sleep in the guest room from time to time because I can't sleep and pace because it hurts. But after 13 years he loves me and headaches are part of the deal.

I get what you are saying on a lot of things. After days of being in pain my shoulders and back are in pain but it is hard to describe. It hurts to be touched. Like maybe skin on fire but not itchy or anything just hurts.

The carpel tunnel wrist thing can actually cause problems in your elbow if you wear it too much because it puts the strain more strain on muscles in your forearm and elbow. I had this problem years ago and ened up wearing this forearm brace thing with a little blow up "pillow" to press down on a muscle to help relive its stress. So that could be contributing to some problems.

My Doc has me on Topamax and Paxil for the headaches. You might want to chat with your doctor about those options. I have cried many times at my doctors office and he hands me a tissue. You have to be able to talk to your doc. They have to know what is going on with you. Even if you cry.

I would like to say that I would recommend you printing out a few of these posts about people and their chronic headaches and how they feel and what it does to everyday life. So he can see that you are not the only one with this problem. Print out the part about my husband. And talk to him. You married him because he is your best friend. He can be one of your biggest allies in this. But unless he has ever been through it he cannot understand. Educate him. Maybe even give him this website to visit. Give him a snack and shut the door.

A lot of us have been in a similar place. It is depressing and overwhelming at times. I am third generation and my niece at 7 just had her first MRI a few months back. So it is a genetic/familial thing for us. I have been ruled by them. It is frustrating. I have cried in pain. I have laid in the dark in pain. I have paced in pain. And it seems sometimes there is no end. But there can be help and the right doctor can help.

My Dad is in Stage 4 metastatic colon cancer. Undergoing chemo to buy him a bit more time but they said he won't make it until the end of the year. He had the headaches. He has always understood me. And in a few months I will not have him anymore. Life seems cruel sometimes. I feel angry sometimes.

I feel cheated sometimes because I am saddled with these headaches. My sister is plagued with them. Buy I guess it is my cross to bear in life and I try to do it the best that I can. I have found the best allies I could to help me with my burden. And hopefully you will too. You have to be proactive with your own care. Have your husband be a partner to you in this. (Just my thought)

My profound sympathy to you in your loss of your father.

Let me know if you need anything. I keep watch here because I feel comfort here. Even if it is cyber.
 
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walksalone05 responded:
hey why ,It sounds a lot like you may have fibromyalgia. You have a lot of the symptoms.

And you definitly need to get a dr who listens to you. That's important for people with chronic pain. We all(chronic pain sufferers) probably have had drs we had to change because the old one wasn't doing the job.Whenever they keep saying "no,no" that usually means they're not trying to help or don't know enough about headaches.

Fibromyalgia can definitly give you headaches.Also you may be able to get corticosteroid nerve blocks for your neck pain,and at least the headaches that are caused by your neck pressing on blood supply and muscles to the brain could be relieved. Get a pillow that supports your neck at night,and you may cut back some of that problem. Have you ever seen a pain spec? They have lots of options,including TENS units which I use when mine get bad. but you can probably get the nerve blocks from your regular GP. I actually did that.

Also you might be suffering from clusters besides the migraines,because you said you get pain in your eye. Very few people who get migraines also get cluster headaches,but they're out there.One thing that helps for that is oxygen therapy.Sometimes Imitrex helps also.

What all preventatives have you tried? there's a lot of them,but you said you've tried everything so that's probably a dumb question.You never know tho,if your dr is as uncooperative as you say he may not have prescribed you everything to try.

Although I'm thinking you might have the fibromyalgia,numbness is common with migs. But I think it only lasts as long as the headache does,so if you've had it for that long it may not be from migraines.

Do you have any allergies? I have bad pollen allergies and they usually come at about this time of year,my mom says from trees. Different people have different allergic reactions to things,mine right now is extremely itchy eyes and it's driving me crazy. You could be having the throat and pruritis from pollen,or foods. I was putting allergy-eye drops in my eyes but it didn't help a lot so I took an allergy pill and it helped for a few hours. Maybe you can go to an allergist,you would be surprised at the things you might be allergic to. I found out I have a bad allergy to dust mites. They might be in your pillows or bedding. Not trying to scare you,but I would get an allergy test just to see.

I wouldn't ever tell someone they are a hypochondriac,what people don't understand is some people are just more sensitive to their environment. My dad has every problem in the book, because he's sensitive to everything.

About your period. there's stuff you can take that can help and some things that might hurt. Estrogen is a very bad thing for headaches because it causes imflammation. However,in some cases it helps level out hormones. But if you're estrogen sensitive you might have to stay away from it. Progesterone on the other hand can help. But there are some BCPs that women take that eliminate their periods and have a low estrogen content,and you skip the pink ones to stop your period or shorten it.

If the dr you have is trying to throw anti-depressants at you,he should at least know which ones can cut back on headaches, and the two you mentioned aren't usually prescribed for that. The blatant problem is you're depressed obviously because you're dealing with chronic pain,and there's a lot of people out there with the same problem. Although depression itself can cause headaches,I don't think that's the case with you. I was exremely depressed for years because of my headaches.

Any headache dr would do bloodwork,by the way.

I'm really sorry about your dad. My dad's had his share of medical crisis,and takes about 10 different pills a day! He's 76 now and I don't know how he made it this far. He can barely get up and walk anymore.

One thing you can try is excercise. Swim or walk in cool weather,both shouldn't cause headaches.
 
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starlitefairy responded:
Let me first say how reassuring it is to hear other people talk about their frustrations with chronic, daily, UNDIAGNOSED headaches. I have suffered everyday for the past 9 years (yes, I kid you not, 9 whole damn years) with headaches ranging from annoying to crippling. The unusual change that has occurred over the past year, however, is the neck pain and swelling. Every time I get a headache now, which is approximately 2-4 times a day, my neck feels like it's ten times too large for my body and I have this incredible urge to put pressure on it by pushing on it with my hands. It mainly bothers me in the front, in the middle. When it starts to hurt and feel swollen, the rest of my neck feels stiff and my back and shoulder muscles tense up terribly. This is all detailed information that I have given to numerous doctors and they all choose to ignore them. My PCP works in a primarily poor, uneducated community and tends to diagnose more common disorders and ailments. However, he has been good to refer me to specialists. But when I am sent to specialists at large hospitals and my tests return mostly normal results, they try diagnosing me with extremely rare, ill-fitting diseases. I get a second opinion, and they laugh at the diagnosis. Then they tell me I have tension headaches. EVERY DAY? CRIPPLING HEADACHES? I've been suffering from seizures also, but my neurologist, rather than further investigate the elusive cause, is suggesting I have Lupus (based on my positive ANA test alone). My PCP found this quite amusing, considering I have no symptoms of Lupus. However, the neurologist prescribed Topamax which I've been taking for about a week. Now, I don't know any of your other medical history, but my honest opinion is that the tingling you're feeling is from the Topamax. That drug made my fingertips tingle incessantly, then my toes, then turned to my nose and eventually my lips. It was also making me cry CONSTANTLY and that is absolutely not an exaggeration. I wanted to kill myself everyday that I took it. I have a sleep disorder and it seemed to exacerbate it also. My headaches never decreased. I also DO have depression (and have for as long as I can remember) and have been on multiple different anti-depressants. They have never helped or worsened my headaches. Your doctor, I'm sorry to say (and perhaps it really isn't my place and I apologize in advance) doesn't give a damn. He is doing the bare minimum. Patients like you and I are falling in between the cracks of the health system. ALL these doctors, most don't communicate with one another, and we suffer. I am going to try seeing just one more neurologist before I give up for good and this one is going to be a woman no matter what it takes. My first male neurologist told me I needed a vacation, I needed to put on a bikini, get a boyfriend, and start reading the Bible before bed. He said that would essentially take care of everything. And the appointment was just for me to get my license reinstated!!! I have seizures, not a lack of spiritual self or self confidence. Good god. This second male neurologist also told me I needed a vacation, told me I was having multiple episodes of complex partial seizures of an unknown cause, and did nothing to treat them. Maybe a female will be our savior. Please post back and let us know how you do with your next doctor appointment. I would really be interested in hearing what they have to say. Hopefully you get a chance to really explain your symptoms to a doctor who is interested in listening. Feel free to email me personally if you would like to chat about our experiences. Good luck to you and I truly hope you feel better very soon!!!
 
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nejatee responded:
have been having pain in my neck and shoulders also, and have had swallowing problems. my swallowing has been tested and they say Im fine.Im about to take natural remedies.I have taken zoloft for awhile (years) off and on. i feel like these drugs are potent and Im sick of taking zoloft.there has to be a natural remedy to take care of anxietyand de[ression. the worst part for me also is rapid heart beat after taking zoloft. its scary and not worth it anymore not to mention dry mouth. so I am recommending maybe try natural remedies before you (we) drive ourselves crazy trying to find out whats wrong.I know Im not crazy but my side effects are not worth it anymore...hope to hear from you and take care.
 
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jessicawulf responded:
I know exactly what you are going through. Our headaches/migraines are not identical, but I totally understand what you are dealing with - You know what is happening to your body, maybe not enough to successfully diagnose it, b/c we are not doctors, but when we give doctors all the clues, and they don't go with any of our suggestions, or hunches about what is causing our pain -- it is damn frustrating. I see my first neurologist tomorrow. I am hoping that he listens, and figures out what is going on with me. Other medical problems I've had usually take several doctors and MONEY! to diagnose correctly. I hate the idea of docs throwing pills at you and hoping something will work. Its just guessing. Why can't they just figure out what is wrong and then give the correct medication? I don't feel like being a lab rat. I am not an experiment. This is my life that they are playing trial and error with. Sorry if I didn't make you feel any better. I am depressed about The whole situation too -- and venting feels a little better. The sad thing is, I think people on the computer listen to me more than DRs!
 
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An_250630 responded:
My neck muscle would hurt causing my headache to hurt.I usually press on my upper neck muscle where my jaw is at and then i have this feeling like i was high, (ive never done drugs) but really, that feeling i was about to faint! ive done so much that ive become addictted to it. its not healthy so i stop. My friend is a Therpist and she told me that whats causing my headache is Depression, Stress and Weather! ( I live in GA and the weather changes dramaticly. In Summer it would rain and sometime would be Humid) (In Winter, the weather would be like 4 seasons in a week) There's nothing you can do about it. I hate taking pills and sometime i think about killing myself because it gets worse sometime.
my tip is just massage your neck muscle and then breath in and out. do some neck workout and take 2 EXCEDRIN Migraine pills.and do it again and sleep. .
Works for me, and good luck to you!
 
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itmatsb replied to An_250630's response:
Make sure you aren't pressing your neck where your carotid artery is. That's a way that can cause a carotid artery dissection stroke! There are proper ways to loosen up the neck, but never on the front on the neck by the jaw. You would be best to get the exercises from physical therapy, or better yet, get nerve block and trigger point injections. The neck pain causes migraines. And taking any pain reliever more than 2 times a week, you risk continual rebound migraines.
 
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inpaininaz responded:
Hi~ I know exactly what your going through!
I started having migraines 20 yrs ago. In the last 5-6 years I have progressed to having migraines daily, my neck swells and hurts so bad that sitting in my chair or laying down sends sharp stabbing pains straight to my head. My hands swell, hurt and I have lost strength to the point where I often drop things (they just let go). I have been to the neurologist and he seemed more concerned with my hands then my neck and head and told me that I had caporal tunnel syndrome and that's why my hands were so bad. But now the pain and weakness is starting to radiate up my arms as well. I have been prescribed MANY different drugs~ most do not help, they just make me sick to my stomach or make me sleep all the time and I have gained so much weight which I can't seem to lose even though I eat very little because my stomach is always upset. I did find that Ferinal (spelling) helped but I have racked up so many medical bills (thousands of dollars) that I have been dropped by all my doctors, because I can't keep up with the bills. I have insurance through my husbands work but the specialists are just too expensive for a 1 income family. I can not work do to my migraines and hands, I do not qualify for disability even though it's so bad I can not even clean my house or do my hair, drive, most days I have to have my family help get dinner on the table. and even help me get dressed, I can not do anything for my self.
My family is very supportive though they are a little tired of the issues as well.
The doctors don't know, don't care what's causing all of this, Since I had all the MRI's, Cat scans and such years ago when my migraines first started they will not give me any of those tests again, I had a hysterectomy 3 years ago and they say my hormone levels are fine. I believe my hand and neck problems are connected but my doctors told me I was wrong, even though they clearly do not know for sure as they wouldn't do any tests, but they are very good at making feel like your making it up. So yes I know just how you feel. I hope you find the help you need...I hope I find help one day too.


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