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    Old 10-08-2008, 06:45 PM   #1
    sammyo1
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    Headaches not going away

    Hey everyone, I was in ER couple weeks ago with a headache that topped even a migraine. This pain has been lingering. I can feel it in the neck & up the back of the head, it will move to encompass the entire top & really hurt around the eye area to & pretty much the whole head. Strange but it can make me feel like my eyes are to painful to keep open. The morning I ended up in ER I could not open my eyes. When I told the Er doc. this he just said what do you mean you could not open your eyes, like I was nuts of something, but honestly it hurt so much I just couldnt.
    My neck has been cracking alot when I turn it lately & feels weak.

    I am scared, really scared of this headache going full blown agian. Nothing helps it. Does this sound familier to anyone, any clues... I am really thinking it has to be coming from my neck. Just thought I would see if anyone has experianced anything like this. Thanks for your time, Sammy

     
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    Old 10-13-2008, 04:05 PM   #2
    maisie jane
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    Hi Sammy
    I also have been experiencing pain which starts like tension at the base of my head with painful cracking and popping when i turn my head, this then radiates over to the top of my head and at times above my eye and at times it feels like sinus no set pattern. I have been to see my GP and she is sending me for blood tests on 17th so will see if anything shows up, like you i have been thinking it is from my neck, but late at night the mind tends to wander and panic sets in thinking all sorts of medical problems, will keep you informed, take care
    Maisie-jane x

     
    Old 10-13-2008, 09:17 PM   #3
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    Re: Headaches not going away

    It could be coming from your neck - are you feeling any type of muscle spasms in the neck and back of the head? It could also be a true headache - hopefully your doctor would consider xrays and MRI of the brain and neck.
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    Old 10-14-2008, 05:39 AM   #4
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    Re: Headaches not going away

    Masie & AZ, thank you so much, I am really trying to put some pieces together here. Yes I do believe there are some spasms involved & my neck hurts when these headaches occur. Had a ct done at hospital, nothing there.
    I would get these when my neck was worked on in any way during PT. Finally the doctor I was being treated by at the time said the PT was to stop any therapy around the neck. I have to believe its all in that upper back/neck. Alot of cracking & my neck feels so tense & stiff some days. I am having so much pain the last several days in my upper back & scapulas. Could not even let my left scapula touch the chair it was so sore. These headaches are in a league of their own, nothing alleviates the pain. Scares me. I can feel it starts right at the base of the neck & also feel a bugle in the neck around what I am assuming is one of the discs. I am waiting to get into my PM to get the results of the last MRI, I dont get why nothing signifigant shows. I think the PM is hoping the the back surgeon he wants me to see will do further testing such as a myelgram (sp) or a test I have yet to have done.
    Any opinions? My hands & arms/shoulder are driving me crazy with pain lately. Mornings being the worst. When these headaches start seems like the start at the back of the head stemming from the neck. Then engulf the entire head. Pain much like a migraine but on both sides not just one. My eyes would hurt just to open them.

    Please do let me know about your blood work results, I am curious to see what yor doctor is looking at.
    I so appreciate your replies please share any opinions I am really trying to help my doctors to help me. Just getting worse. God bless, Sammy

     
    Old 10-15-2008, 12:03 AM   #5
    matt3507
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    Re: Headaches not going away

    Hi Sammy:
    Your pain sounds like mine. My MRI showed problems with the c5-c6 and c7-t1 discs. I hope you read this. I woke up in the middle of the night with what felt like a knife on the left side of my spine at shoulder blade height - 2.5 years ago. After the ER and MRI the pain started clearing up, but at the advice of my doc. I saw a PT. She gave me traction and played around with my neck. I woke up the next day with the kind of H/A you describe and I have had precious few breaks from them the last 2.5 years.
    Ice, handfuls of Advil, heat, massage - NO relief, that's the scary part. Without prescription meds. the pain robs you of life. All you can do is lay there like a ghost while your freinds and family slowly take over your old tasks. It really is close to being dead - I used to be so strong and tough, I could do almost anything physical and I feared no man. I worked in construction and threw around 80# bags of concrete. Now I bear no resemblance- whoa! sorry I'll stop hijacking your thread, I'm just really bummed today but I also don't want you to go to a physical therapist that will try to give you traction or manipulate your neck. Just my opinion, good luck.
    matt3507

     
    Old 10-15-2008, 01:19 AM   #6
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    Re: Headaches not going away

    I have similar issues. I actually had fusion with Intrumentation and unfortunately I had hoped the issues with the migraines would go away after surgery. But, they haven't and I've had migraines for years (they just never started from the neck and worked their way up) prior to the neck injury. I do take migraine prevention medications - Neurontin, (which does help the frequency, but I still get them and they can be quite painful. I also take Zomig which I have to say helps more than any narcotic pain reliever - especially with these types of headaches. I'm surprised your Doctor dismissed your eye issues in such an insensitive manner. I have had major eye related issues - which includes - auras, painful eyes, visual changes, etc. It's very common - especially if your neck related injury is leading to migraine headaches.

    I hope you get answers and relief soon.

    ~ Fiona Jo
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    Old 10-15-2008, 09:58 AM   #7
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    Re: Headaches not going away

    Fiona & Matt, I am so sorry for your situations, breaks my heart to hear you both suffer so.
    Fiona, I suffered migraines on & off for years, they would last up to 30 days at a time, these are painful like a migraine but covering the much of the head. I had the aruas & so on with the migraines to, vomitting & stroke like symptoms. These headaches are just different, but simulair. My eyes, to open close or just move hurt so much. I could not move my head because of my neck I believe. I so feel for you. How awful. I have pain everyday, very littel movement much of the morning. I walk around in the mornings with my arms kind of glued to my side, afraid to move or extend them because of the pain. Although I thank god that I can get relief on some days & I am thankful. The pain is always there but I learned to appreciate being able to still somewhat motivate. For you I am sorry, I know how migraines feel & to suffer everyday is to much for anyone to live normally, but have hope. I will keep you in my prayers.
    Matt, you have it. I will not let anyone near my neck. I have learned the hard way. I really believe I have problems in the same area, & in the T area to.
    I am frustated that its thus far not showing on any of the MRIs enough to be conclusive, meanwhile I suffer. How can I have so much pain & very litttle movement & nothing conclusive show. I have yet to get the latest results from the last MRI, my Pm is on vacation.
    I feel for you, so sad. You may not have the same body, but you are still the same man. You took the time for me & that tells me you are caring & kind. dont forget that. I felt like you desribe in the beginning, just a shell not wanting to do anything, to afraid of causing more pain. You vent here all you want. I dont mind, I dont consider it hijacking, just sharing. I feel for you & you have convinced more that some where in that area is problems that are not be addressed & just progressing. So thank you & god bless. I hope some day I can return the favor. Sammy

     
    Old 10-15-2008, 11:47 AM   #8
    matt3507
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    Re: Headaches not going away

    Hi again Sammy:
    Thank you so much for the kind words. Listen, I'm not as depressed today. I would like to tell you what has worked for me and what has not.

    June-2006: ER with the stabbing pain. Saw my primary care physician I had known for 7 years. When I asked for refills of pain meds I was immediately a drug addict. I could not believe the way his temperament changed when Advil and rest didn't do the trick. My conclusion is that pcp's freak out if you don't get better right away. So I went to another GP and he referred me to a Physiatrist. I recommend you find one. They deal with people like us that don't seem to get better. They are chronic pain specialists. My physiatrist has pointed me in the following directions:

    PT: I have went through 6 PTs. Some were all about strengthening with very light weights. Some were all about physical manipulation. No conventional exercises have worked for me. Walking, weights, construction (stupid *** idea!), elliptical machine, just about any physical activity all aggravate my condition.

    Here is the good stuff. Look up Feldenkrais on the web. I have seen a Feldenkrais PT for almost a year now and I have regained alot of range of motion. The other thing that has helped is QiGong (pronounced cheegong). I recommend the Turtle form (Ling-Gui). You can buy books and tapes on Feldenkrais also and do the stuff yourself. The TMJ exercises helped with my H/A.

    Lastly, a few bits of info. that may help you. If you can't work take a computer class at community college or something. Just try to get out of the house at least once a day. Also, I have had breaks from my pain - the longest was 6 days. I am learning to not get my hopes up to high, because so far my pain has always returned. This causes an emotional rollercoaster not just for you but your family. My poor wife used to get sucked into the fantasy that I was fully recovered, then I pick up a can of porknbeans or something and it's back! It has been super hard on my poor wife. Thank God she has stayed with me. I certainly would be dead or in a public assisted rest home if not for her. If you have a spouse, my advice is to stay positive around him/her. She feels useless when there is nothing she can do for me so I try to smile and be nice as hard as I can.

    Very lastly: Take food with your meds. and always have a huge glass of water. There are people out there with massive debilitating pain that can't take their meds anymore because they got an ulcer. Without enough water/food your meds will destroy your stomach.

    Well there are a few things I learned the hard way. I really hope you can use this info. You cheered me up so much. I will be thinking about you.

    God Bless and keep hoping, Matt

     
    Old 10-15-2008, 08:25 PM   #9
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    Re: Headaches not going away

    Sammy - Thank you for your kind words. I do appreciate it. I really hope you get answers soon. I totally understand your frustration - especially when you're not getting answers. It definitely does sound like what going on is tied to your neck and I'm so sorry that you have are dealing with so much pain on a daily basis. It just doesn't seem fair that such and obviously compassionate person as yourself has to deal with so much pain.

    I hope your MRI can offer some answers and hopefully lead to interventions that will help this pain you're experiencing.

    You're in my thoughts.

    ~ Fiona Jo
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    Old 10-16-2008, 04:26 AM   #10
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    Re: Headaches not going away

    Thankyou both so much. Please let me know how you both are doing.
    I am still working, no physical lifting & no early mornings. I work 1/3 time I used to & know that if this get to much worse I wont be able to at all. Then I will have some struggles trust me. Thank you so much Matt for the info. I used to drink atone of water but cut back, guess I will have to kick it into gear again.
    I am on the pain magagment board alot, wonderful people there & a huge support. God bless you both, I will be thinking about you. Sammy

     
    Old 10-17-2008, 11:22 PM   #11
    Nicole74
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    Re: Headaches not going away

    I know exactly what you are going through. I usually get menstrual migraines, but since the spinal cord injury my migraines have gotten so much worse. It's been only a month and I'm on my 6th migraine right now. I'm just waiting for the meds to kick in and trying to keep them in my system. Now my headache are starting at the base of my neck and turning into such severe headaches/migraines. I'm wondering if I will ever get to sleep a full nights rest again.

     
    Old 10-18-2008, 04:16 AM   #12
    sammyo1
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    Re: Headaches not going away

    Nicole, Can you tell me abit about your headaches. I know when I used to get migraines they were primarly on the left side. Ended up in the hospital with them a couple times.
    These headaches have the pain of a migraine but cover most or all of the head & I can feel my neck sore & stiff when I get them. They really keep you down. I will tell you just had one yesturday & my neck hurt to where I could no press on it at all. I tried moist heat & no relief, at one point I thought it was making it worse. If I can, I take a small ice pack & put it at the base of the head on the neck, it actually helps. That is what I did yesturday & ended up falling asleep like that but it did get some relief. I grab the ice if I am home now, it seems to keep it from progressing & is the only thing that helps give me relief. No meds help thus far. I know the one I had that sent me into ER was so bad I could not move my eyes & at one point even keep them open, opening them was an effort because it actually hurt to do so. The pain was so bad I could not believe it. I just laid there & sobbed. I took some meds & my husband went to get me an ice pack. I fell back asleep with my jacket on, my husband was getting ready to take me to ER this was like at 4:00 am, but I was in to much pain to hold my head up & vomitting. Woke up with not being able to move my neck both times & the pain esculating, so ended up in ER anyway. The lights, like with a typical migraine were excrucitaing in ER. They wanted to keep me but do to being left in the hall because they were so crowded I declined. It scared me not to be able to move my head at all because of my neck. That was the worst one & I am afraid of that occurring again. I believe I was in full muscle spasm with my neck at the time & try to take my muscle relaxer at night now. I dont take them like I should because of the other meds I am fearful of being to tired.
    At night I dont care, if they help me sleep & prevent that I take them.
    I am on valium for the mucscles & it does help at night. Muscle spasms I believe come along with the neck problems & need to be treated.

    Do you take anything for that or has your PT mentioned any spasms?
    The PTs can feel when your muscles are spasming & if its bad. Mine in my chest were in constant spasm & it hurts.
    I would try the ice, does not sound comfortable but it works for me more then anything. Probably due to inflammation. Moist heat may also work for you if you have not tried it. For me it just did not cut it. I also use essential oils that soothe, they do work. Even with my old migraines my mother in law would get me lavender oil to help relax me, now I use peppermint to & it does seem to soothe the muscles, but only the good stuff, along with some other oils. I have given some to my friends & they all love it. My one used it on her knee & was amazed on how well it worked. When your in this kind of pain I figure what do you have to loose? There is a company based out of michigan that will send you samples, I cant list the name or site but you may be able to find it if you are interested.
    I know how bad it is & so feel for you, it takes over your life & can get to you. I hope you find some relief & please let me know how your doing. Good luck & god bless, Sammy

     
    Old 10-18-2008, 09:13 AM   #13
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    Re: Headaches not going away

    My migraines are not to just one specific side. They are either left, right, both sides or the top of my head. Since the spinal injury, they will sometimes start from the back of my neck. Until now, they would happen 3-4 days before my menstural cycle.

    Last night at midnight I woke up from a migraine full force and I threw up right away. This time is was at my left temple all the way to the back of my neck. I hurried into the kitchen and grabbed a maxalt. I went to the recliner to see if the maxalt was going to work. It will work almost every time unless the migraine is too severe. I waited for about a hour and then I took a Fironial because the Maxalt was not working. Well, the Fironial did not work, so I took a percocet a hour and a half later. I finally zonked out after 4 hours of agonizing pain. When I woke up this morning I still had a lingering headace at the back of my neck, which is still there right now. I'm still a bit nauseous right now too.

    I'm not in PT anymore. The doctor I was seeing pulled me out this week because he felt it wasn't helping me any. I do get muscle spasms constantly. I even have head jerking/tics and the doctor says it's from the muscle spasms. He put me of Flexeril, but I can't take it, it makes me way too out of it. The doctor referred me to another neurosurgoen and I have the appointment with him on the 23rd of this month. He prescribes me percocet for the pain.

    I haven't heard about the the oil scents working for pain, it's worth a shot trying it out. All this medication feels so toxic to my body. I ice more then I use heat. Sometimes I use both at the same time. I have such horrible pain where the disc is compressing against the spinal cord. Its very frustrating to have such limitations all the time. I really can't do anything before my right arm goes numb or the pain worsens. I hope you too can find relief soon. This isn't any fun.lol

     
    Old 10-18-2008, 02:52 PM   #14
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    Re: Headaches not going away

    Oh my I feel for you, makes it all worse when the vomiting starts.
    I feel so bad when I hear of anyone going through those headaches on a regular basis, that is the worst pain.
    I could not take the flexarill(sp) either, not only did it make me tired it just did not work. With the valium I can take 1/2 & dont take it all the time, so not worried about becoming addicted & I figure its been around like forever so at least thats something. I honestly believe in order to gain some pain control you are better off trying something for the spasms. I found that out the hard way. I took skelaxin to & nothing at all with that one.
    I remember the chain of meds I had to take for the mirgraines & nothing working, you honeslty think when they are at their worst that you wont survive it. Scares me to even have an aura, & now the neck problem scares me.
    I know how you feel, I was so independent & active, never waited around for help, just did it. Now I cant do so much. Love to ride & moved by a bike & walking trail a few years ago, was so exicited & shortly after moving in this happened, so no riding. I really miss it. My arms would never support me & I would be asking for agony. I get tempted but just holding on to a blow up raft while floating in the pool had me up with spasms all night. Never feel it till after.
    I truely hope you can get the surgery you need & just get on the road to recovery. I am glad your out of PT I had to wonder about that in one of your first posts.
    I just tell myself it could be worse, like those headaches daily.
    Until they do the surgery or what ever they decide perhaps it would be worth trying something for the spasms. I know those alone contribute to so much pain. Good luck & please keep us updated. Sammy

     
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