- This topic has 81 replies, 34 voices, and was last updated 8 years, 2 months ago by
.
-
Posts
-
Hi my friends, No matter what your condition is, who here has that horrible pain in the base of their heads in the back (occipital area) that radiates down their necks to the tops of their shoulders (in what we call an “angel wing pattern”)?
Please let me know if you have this or wake up with this. It is the kind of tight muscle pain that gives us knots in our neck muscles, and we would give our first born to have that area massaged (well, maybe the second born. ha).
I think I have an answer!! THIS is exciting! Big hug,
🙂 DianaHi Dr D… does having it only on one side count? It is the left side for me, and sometimes that muscle (or muscles?) will absolutely lock up on me… and man is it painful!!
Hi Dr D… does having it only on one side count? It is the left side for me, and sometimes that muscle (or muscles?) will absolutely lock up on me… and man is it painful!!
Hi Gail, Boy, that sounds painful. OK, I think this is worth a try for you, or I wouldn’t suggest it, OK? Can you get a soft cervical collar at your drug store and wear it for an evening while you sleep and let me know how you feel the next day? Not just how your neck feels, but how your overall symptoms are? Do you have POTS, BTW, Sweetie? Thanks so much! 🙂 Gentle hug, Diana
I have it on a chronic basis. Worse when I first wake up but it is always there at some level throughout the day. I have knots from my neck to my shoulders and in my upper back non-stop as well. I’ve been a mooch for having the back of my neck, at the base of my skull, squeezed and massaged ever since I was itty bitty 🙂
I’m willing to try anything! (Been a LONG, tiring week. I’m not just out of spoons….I’m out of any and all cutlery altogether at this point. It is a sheer act of willpower and masochistic stubbornness to drag my self around right now.)
Marie
Yes, I have POTS.
Hi Marie… maybe we both should give it a try. I’m willing, although it may be several days before I can get to town. We live in the boonies! : )
I will let you know, Dr D. Thanks for the suggestion.
I have it on a chronic basis. Worse when I first wake up but it is always there at some level throughout the day. I have knots from my neck to my shoulders and in my upper back non-stop as well. I’ve been a mooch for having the back of my neck, at the base of my skull, squeezed and massaged ever since I was itty bitty 🙂
I’m willing to try anything! (Been a LONG, tiring week. I’m not just out of spoons….I’m out of any and all cutlery altogether at this point. It is a sheer act of willpower and masochistic stubbornness to drag my self around right now.)
Marie
Hi Marie, I love someone who laughs in the face of adversity! “I’m out of any and all cutlery” — can I steal that line? 🙂 OK, Hon, all of this will be in Part 2 of the Driscoll Theory in more detail than anyone really wants, but in a nutshell — can you get a soft cervical collar at your drug store and wear it at night, then tell me how you feel the next day? If GREATLY improved, this is becoming a ‘quick and dirty’ way to see if someone’s intracranial pressure is increasing at night time. If the collar is a big help, then a trial with Diamox (if you have no contraindications) may be in order. Even one pill, one night, should tell you. The difference is not subtle. If that works, then we can get into your options. (Very basically, when the pressure increases, we tighten our neck muscles to try to protect our brainstems. The muscle tightening actually pulls down on the skull up to about 3.6 mm (I met a researcher working with the movements of skull plates) — just enough to cause what doctors are calling “cranial settling”. This causes your intracranial pressure to spike. By keeping the muscles relaxed with the collar, you will avoid the skull being pulled down by the muscles. Cool?
Yes, I have POTS.
Hi Marie… maybe we both should give it a try. I’m willing, although it may be several days before I can get to town. We live in the boonies! : )
I will let you know, Dr D. Thanks for the suggestion.
I’m excited to hear back! This hasn’t failed me yet, but I didn’t want to get too cocky about it yet. 🙂 Fingers and toes crossed (which is easy to do with EDS. ha. 🙂 Big hug, 🙂 Diana
Wow, funny you should ask that! That has been one of my chief complaints for several years. I haven’t tried the collar yet. The question I have had about this type of headache is, why it almost always starts when I am sleeping on my back. (Sometimes when on my side, not nearly as often.) The severe pain in at the base of my skull, down my neck and down to shoulders wakes me up, but it is too late by then for the pain to subside by turning onto my side. (Sometimes it helps) The pain will continue sometimes for the whole rest of the day, and not responding to NSAIDS. That pain will at times cause nausea and an overall skeletal type pain. I have less severe pain in the same locale when I have my head down, such as when reading, writing, cooking, and using the laptop, and if I look upward, like when hanging a shower curtain or putting on mascara.(?)Oh, and even when wearing a turtleneck!(??) I had cervical MRI that doesn’t show a neck problem that would cause this degree of pain. Does this description suggest an intercranial pressure problem? I do have other symptoms that do.
Thanks so much for any help/ideas.Wow, funny you should ask that! That has been one of my chief complaints for several years. I haven’t tried the collar yet. The question I have had about this type of headache is, why it almost always starts when I am sleeping on my back. (Sometimes when on my side, not nearly as often.) The severe pain in at the base of my skull, down my neck and down to shoulders wakes me up, but it is too late by then for the pain to subside by turning onto my side. (Sometimes it helps) The pain will continue sometimes for the whole rest of the day, and not responding to NSAIDS. That pain will at times cause nausea and an overall skeletal type pain. I have less severe pain in the same locale when I have my head down, such as when reading, writing, cooking, and using the laptop, and if I look upward, like when hanging a shower curtain or putting on mascara.(?)Oh, and even when wearing a turtleneck!(??) I had cervical MRI that doesn’t show a neck problem that would cause this degree of pain. Does this description suggest an intercranial pressure problem? I do have other symptoms that do.
Thanks so much for any help/ideas.KC!!!! I figured this out this WEEK! Some of us actually go into SHOCK while on our backs. For now, try to sleep slightly elevated and on your side, OK? I’m writing this up for Dr. Francomano. Are you taking Diamox yet? Betcha that would help! For my kids and I (and it’s getting to be hundreds of you, it is a life-changer. And if you are on mast cell meds, NSAIDS aren’t recommended (they cause mast cell degranulation). Tylenol, OK? Big hug, Diana
Dear Dr Di, Thanks for the info!! I am more than anxious to try Diamox, but not sure if I need to get it from my eye doc or pcp and how to approach them about it. Any suggestions?
Yes I have this pain and am being looked into re CSF. I have EDS (with marfan habitus) and pots too.
I get horrendous headaches when I sit or stand, cough or sneeze and since March this year I am having terrible hearing issues – hyperaccusis, tinnitus, muffled hearing and deafness with my headaches. Seeing a neuro in 2 weeks.
Dear Dr Di, Thanks for the info!! I am more than anxious to try Diamox, but not sure if I need to get it from my eye doc or pcp and how to approach them about it. Any suggestions?
Hi KC, your PCP should be able to prescribe it. Just ask for a typical prescription for going to the mountains! (It is used to prevent altitude sickness). And be sure to start your first dose at night time, so you can get that immediate morning “Wow” effect. Will you let us know how it goes?
🙂 Big hug, DianaYes I have this pain and am being looked into re CSF. I have EDS (with marfan habitus) and pots too.
I get horrendous headaches when I sit or stand, cough or sneeze and since March this year I am having terrible hearing issues – hyperaccusis, tinnitus, muffled hearing and deafness with my headaches. Seeing a neuro in 2 weeks.
Hi Loulou, those are classic symptoms of high intracranial pressure. Neuros love to do LP’s to “prove” it, but see if your doc will let you go on Diamox for a few days instead (for reasons to try to avoid an LP, please see The Driscoll Theory. 🙂
Hi!
I have been diagnosed with Chiari 0 Malformation with 3mm herniation. Obviously I don’t fit the 5mm criteria for Type 1. I started taking Diamox and became violently ill. I also had a moment where I ended up driving to McDonald’s to get breakfast but when I got to class I had no recollection of stopping off at McDonald’s. I also have no idea what McDonald’s I went to. I literally felt like I was outside my body for 2 days after only taking one dose.
Is there another alternative drug that has the same or similar effects? We discussed that my herniation is possibly a result of hydrocephalus and the pressure pushing down on my brain.
I have neck pain all the time that radiates to my shoulder blades. I also have issues changing postures. Lying down is comfortable for a little and then the pain comes back. However, when I sit up I feel like I am going to faint. (I do have Neurocardiogenic Syncope but have triggers that I am able to control).
Not sure where to go from here. My doctor does not want me to continue taking Diamox, and I don’t really want to consider decompression surgery just yet.
Thanks!
JillNot diagnosed with pots yet but I have two docs that think I may have it. No referral to electrophysiologist yet. I was rearended June 2010 and I remember being on the emerg table saying I felt like someone was sticking something in the base of my skull. No fractures, MRI ( c5c6 c6c7 mild right paracentral disc protrusion), CT angio normal, carotid ultrasound-left mid carotid elevated velocities possible mild stenosis. My osteopath seems to think it is the alar and transverse lig are weak. Point is I’ve have this pressure and burning pain at the base of the skull since. Worse when I lay down, and much worse when I wake up. If it is pots, what in your opinion do you think it is?
- You must be logged in to reply to this topic.