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Painless head throbbing when lying down

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susan84872
susan84872

I'm 68 and have had painless head throbbing in the top, back and sides of my head which either wakes me up at night or in the morning. This has been going on for the past 7 months and no doctor seems to know what it is.  I am afraid they think I am crazy, but what I feel is real, and I simply don't feel well for hours after waking.  My head feels full when I lean over.  I have an occasional headache, but it does not occur in the back or top or side of my head, only in temples or sinus area and is not connected with the throbbing.  The headaches seem to be connected with sleeping wrong and waking with a stiff neck.  It is not a migrane as there is no pain, no aura and occurs only after I have been lying down.

This is complicated by the fact I have had BPV and tinnitus for 20 years so doctors blame one thing or the other. I sometimes have sinus/allergy issues, but I know the difference and this is not sinus.  I wake up in the morning feeling groggy, ears ringing, tired and light headed (and scared).   I've had an MRI and MRA, both negative.  I was checked out by a neurologist, EENT doctor and a cardiologist and they found nothing.  My BP is on the low side so it is not hypertension.  I often wake up in the morning with a stiff or sore neck.  I have glaucoma and see the opthalmologist every 4 months with lots of tests and he has said nothing about any optic nerve problems for cerebral spinal fluid issues, etc. I sometimes take tramadol for back pain and timoptic for my glaucoma, also prevacid for reflux.  I've tries stopping them one by one to see if they are causing it.  They are not.  I am at my wits end.  I feel like this is serious but no one is giving me an explanation. Could this be IIH?

1 like, 46 replies

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  • hollygb66
    hollygb66 susan84872

    Posted

    I would agree with it possibly being IIH.  I'm not sure what you can do for it, since I've only been dealing with it following a blood patch.  I have Diamox for the high pressure, but there's side effects that drive me crazy, so I'm not taking it.  I've heard your CSF makes the most around 2 am. I'm not sure how they know that, but that's about the time I get a headache if I don't take my Gabapentin that night. Happened last night...Mine hurts though.

     

    • susan84872
      susan84872 hollygb66

      Posted

      Is your throbbing connected always with headaches?  Mine is painless which is confusing the doctors.  How did they diagnose you?
    • hollygb66
      hollygb66 susan84872

      Posted

      Yes, I always have a head pressure and now its with pain.  I had a lumbar punture to check my opening pressure. It was low, so they have been doing blood patches. Now, I THINK I'm in high pressure. But, honestly, can't tell.  
    • susan84872
      susan84872 hollygb66

      Posted

      What is a blood patch?  I'm going to try a therapeutic massage in the hopes it is something to do with my neck and pinched nerves or muscles.  But if that doesn't work, I'm afraid I'll have to get a lumbar puncture which scares me.  Was it terribly painful?
    • hollygb66
      hollygb66 susan84872

      Posted

      So sorry I didn't respond. I didn't see your question.  A blood patch is done by injecting blood they take from your arm and they inject it like an epidural into your spine.  The blood is suppose to travel to any holes in the dura (covering that holds spinal fluid) and plug the hole and heal over it. They inject lidocaine into the area before during the lumbar puncture. You SHOULD only feel pain from that needle.  There's a pressure as they put the needle into your epidural space, but should not be painful.

       

    • susan84872
      susan84872 hollygb66

      Posted

      In two weeks I'm going to an opthamologist and will ask if there is any sign of the IIH when he dilates my eyes.  The doctors keep sending me to other doctors because they simply don't know what is causing the throbbing.  I've read all the symptoms and I don't have any headaches, just the throbbing.  I am light headed and slightly dizzy, but that that has been attributed to benign positional vertigo for years (lucky me!)  I guess the last resort is a spinal tap to see if the pressure is high.  The thing is, I only have the throbbing when I am lying down.  It goes away when I'm up.  When I bend over, it feels like the blood is rushing to my head but it doesn't hurt.  Being a senior, I don't know what is normal!  I've always been healthy and I don't know if aging has anything to do with it.  But, I did have the awful head throbbing about 15 years ago.  It lasted about six months and then went away.  They found nothing on the MRI's then either.
    • hollygb66
      hollygb66 susan84872

      Posted

      You seem to be on the right idea of IIH. If its when you're lying down, something's up...like your CSF pressure! ;-) I have had the opposite feeling of the pressure when I'm upright. I've been to an opthmologist to check my pressure and it was fine. But, I believe I was in LOW pressure not HIGH. I hope they figure this out soon for you.

       

  • abdul53432
    abdul53432 susan84872

    Posted

    I am not a medical professional however I guess the core of this problem is in your neck. Years of bad posture or injury in the neck can cause throbbing, whooshing and flashing in the head while you lie down. If your neck is not straight, or you find your head is bent down or on a side in a normal daylife. Especially when you go for a walk.

    Please check if you straight your head up. Is your neck bone that connects your body and head is curved inside. Or do you feel the disks of your neck bone are not aligned.

  • courtney33962
    courtney33962 susan84872

    Posted

    My wife has almost identical symptoms and has had test after t st as well

    Have you been able to get any relief or answers ?

    Thanks

    • hollygb66
      hollygb66 courtney33962

      Posted

      I have found it to be my neck. My skull was not aligned with my C1 causing my spinal fluid to be pinched.  Look up atlas orthogonal and see if your wife can relate.  I travel two hours one way to see a special chiropractor with the special machine. Also, I see a physical therapist that deals with nerve irritation. Between the two of them, I can feel somewhat better. Prior to seeing these two men, I was back in my bed by 2 pm every day. I would have been in bed by 10 am but I had things to do and I hated going to bed all day. I would put up with the pain. 

      Also, no doctor or tests worked for me either! I think since its a nerve, the only thing that MAYBE would have shown something was a nerve test. However, unless there's actual nerve DAMAGE, nothing shows up there either. And, it hurts like crazy to have it done! 

      Does your wife have number arms/fingers sometimes, too? I do! Again, its nerve related.

    • cj89968
      cj89968 hollygb66

      Posted

      Hi there, I have head terrible pressure in my head when I lay down or bend over to pick things up. I had an MRI and a lumbar puncture, all normal. Today I did yoga and it felt like my eyes were going to pop out of my head when I did the downward facing dog! I am wondering if my issues could also be related to my neck. Did you have any similar symptoms?
    • hollygb66
      hollygb66 cj89968

      Posted

      Hi Cj, So your pressure is worst when you lie down? Do you have pulsating ringing in your ears, too? I know what you mean.  It could be high CSF pressure. Several things can cause it. The local doctors around me are not good at diagnosing it.  It might not show up on MRI unless its REALLY high. You could try going to a chiropractor to see if your skull is sitting correctly on your spine.  Regular doctors do not look for that. Is your head over your shoulders? Is it leaning to one side or the others?

      You can also try staying away from caffeine, salt, and vitamin A. Those can cause a spike in pressure. Its known to be highest around 2-3 AM.  Sleep with an elevated pillow.  All of these would be band-aids and not fix the issue. But, maybe you'd feel better. 

      I found out I had a hole in my dura that holds my spinal fluid.  I went to Duke in November. My doctor found two suspicious spots. One is a bone spur and the other is a herniated disc nearby.  All in my upper thoracic area.  She did blood patching with fibrin glue in those spots (targeted blood patch, if you want to look it up.). I am now dealing with what you kind of have. Since I had LOW pressure, mine is called REBOUND high pressure.   I sleep with my head elevated, no caffeine (or not what I used to drink), and lower salt intake. 

      I hope this helps. But, if you can't find a doctor that can help you around you, you might want to make the trip to Duke. Dr. Gray, Dr. Kranz, and a couple of other doctors seem to know their stuff. If they can't help you, they have neuros and orthopedics they work with there. Also, they will look at your MRI if you mail it to them.

  • linda63134
    linda63134 susan84872

    Posted

    Please explain what is IH. . .I have this pulsating sensation also.
    • Crystaljoy
      Crystaljoy linda63134

      Posted

      Linda63134, are you still dealing with this? If so, how have you handled it?

      Thanks!

  • Crystaljoy
    Crystaljoy susan84872

    Posted

    Susan84872, Boy, does this sound just like me. But I do have tension from the throbbing. I wake up with the throbbing every single morning and every time I wake up. It's awful. If I lay too long, my heads throbs. My physical therapist believes it could very well be related to posture, the way I end up laying in bed as I sleep (kinda fetal position, I guess it seems cozy), looking down at cell or sitting at a computer with my neck kinked. Also my rounded shoulders and my breasts being heavy. Depression will cause us to slump too. Also, if anyone has a stomach or overweight, it puts pressure on the aorta and could cause throbbing too, too much pressure inside. So all together, or any of these could constantly cause throbbing. She suggested losing weight, doing posture exercises to strengthen my back and neck and maybe seeing a chiropractor. Exercise doesn't help these. I believe it helps with weight and depression though. I found ice is the only thing that really relieves these. I'm guessing that it's blood vessels pulsating from one or more of the things I mentioned above. There really isn't anything wrong with us but maybe my therapist is right. I hope you get some relief. Please keep us posted, ok? I'm sooooo glad you brought this up. Thank you. You're the only one I have ever found that has anything as similar as I have, even doctors are bumfuzzled.

    Thanks so much,

    Crystaljoy

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