I’m curious as to how many people have chronic (daily) headaches/migraines and have had their spinal fluid checked?
If you do have a daily problem but have never been checked please still complete the poll as I’m really curious to see if there is a link.
If I don’t get relief from meds, this is something I would definitely consider doing.
I had daily headaches when I first got sick…for about 3 months…every day…after 5 days on medication they went away, never to return. Just fyi
Kelley
I clicked that I had my csf check and something is wrong, because I am part of the study at Duke as you know, but my “headaches” are not painful, it is pressure and all the sensitivities. The study at Duke is intended to help people with chronic migraine through regulation of csf pressure.
Most days I have some sort of head pain but that’s triggered by showers and shampoos and is 100x worse if I eat trigger foods the day before. S
Scott- showers and shampoos are major triggers for me as well. So is blow drying and getting my hair highlighted.
Inafog- I go to Duke this month for my LP so I’ll let you know. I think Dr. Gray is on to something personally and so does my neuro Dr. Adkins. I’ve been on meds for 6 months with some relief but I’m still not well.
I wonder if the person that had the spinal but the spinal was fine is now ok on meds?
inafog, I have the exact same symptons as you.
Its not pain so to speak, except sometimes theres tightness around the neck and temples, but its the constant brain fog and senstivity to light, almost 24/7.
I have a referral to see a neuro so hopefully in the next few weeks I can get a move on the problem, but im in the uk so I dont know how well the doctors here are with these types of problem.
Im seriously considering flying to america if I cant get the treatment here.
I don’t understand why migraines would be related to EITHER too-high OR too-low spinal-fluid pressure. Wouldn’t it be one or the other?
I had a couple of attempted spinal taps (most recently got stuck 5 times under x-ray with no success) but they were completely unable to withdraw spinal fluid. I wonder if that means my spinal pressure is low? They didn’t say. (The taps were done to conclusively rule out MS.)
I have low-level head-pressure feelings most days, maybe every day; I don’t even pay attention because that’s my “normal,” and I’m sure it’s migraine though I RARELY get a real headache. It would be interesting to know what my spinal-fluid pressures were but I don’t think I can find that out.
hell yeah, more than i realised, just starting writing them down. every day bad headache/migraine but i also have some MAYBE autoimmune and a avm in my brain so who hell knows whats causing my vertigo the drs are giving me their best guess…(.Great) wouldnt fall off my chair if i have spinal fluid probs, but never checked ive got enough wrong with me now. LOL :?
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Scott- showers and shampoos are major triggers for me as well. So is blow drying and getting my hair highlighted.
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Hi Elisha – can you describe what happens exactly after you stick your head into a shower and/ or use a shampoo? I usually feel OK until about 20 min after the shower and then a head fog/ fuzzy feeling starts. If I have eaten any migraine triggers the previous day, the feeling is much more intense and will culminate in a headache about 1-2 hours later. Aspirin usually takes the edge off of it and on a good day the headache and effect is gone by about 2 PM. This happens every day of my life if I stick my head in the water. Happens if I go swimming in a cold ocean too. I notice that if I have a shower later in the day – after I have been awake for hours – that the effect is not nearly as bad. But straight out of bed in the morning and into a shower is a guaranteed headache trigger.
As for shampoos, I have to use only brands with NOTHING in them apart from the simplest of cleaning agents. No oils, or additives of any kind otherwise my head explodes with pain. Very chem sensitive on the scalp since 2004.
S
Hey Scott,
I usually get more of the “rocking” when I take a shower and I have also noticed that I get a headache an hour or so later. I’m the same way, I shower, blow dry and seem fine during the process but afterwards it “rocking city”. I’m not sure if there are any triggers that contribute to it or not. I have also noticed that when I shower and wash my hair at night it does not seem as bad. I have long hair and I have seriously thought about cutting it, but I don’t see how that will help. Blow drying does not bother me as much as the shower or bath. I can take a shower or bath and be fine as long as I don’t shampoo. Another interesting thing is that I got my first episode of BPPV about 3 years ago when I leaned my head back in the shower too far. I got a terrible episode of BPPV that lasted about 1 week after I flipped my head all the way over to blow dry underneath my hair. That episode was in March of this year, I got MAV in May. My neuro thinks that’s what triggered it. I’m thinking it has something to do with my neck. Do you have neck problems? Stiffness that usually turns into a headache? That’s why I’m going to do the lumbar puncture to see if I have a CSF problem. If that turns out ok I’m going to look into getting an MRI of my neck bc it seems to cause all the headaches and if the headaches cause the rocking…
Do you get the rocking vertigo? I feel rocky and out of it, sometimes I feel like I can’t even concentrate or that my vision is off. I get a headache almost every day but guaranteed on shampoo days.
E
Hey E,
Yes, we have very similar symptoms but I would caution you on believing this is a “neck problem” per se. What I know is going on for me anyway, is “migraine neck”. In other words, just like migraine produces headaches, it all produces neck aches (coat hanger style). So many people will incorrectly think this means there must be neck pathology (like I did) and then spend thousands of dollars on physiotherapy, chiropractic, MRIs, etc. I FINALLY got that it was all migraine and there was NOTHING wrong with my neck. If I practice the migraine lifestyle and keep my neck in good shape (i.e. I get the odd Thai massage or do my own neck massage with my face down between two pillows as I was shown by a physio) then I’m am virtually free of any neck problems and my head stays clear. I haven’t needed a physio or chiro for about a year now whereas before I was seeing a chiro every week. It was an enormous waste of time and money. I’ll never go to a chiropractor again as they had me locked into thinking there was neck pathology going on. All bullshit.
The real red herring in this is that once your neck starts, it refers pain into the head because all of the muscles are connected. It then seems like neck pathology is *causing" headaches. This can be true of course. If you hurt your neck, do have a serious issue in the neck, or have poor posture at a computer, you can bet it will trigger migraine as well. Or if you let constant neck migraines cause the muscles in your neck to seize up as they will do if it goes on long enough without intervention, that will in turn cause more headaches. It’s a positive feedback loop.
I’m not saying you shouldn’t investigate and make sure your neck is physically fine but I would bet the farm that it’ll come up with nothing (no one’s neck is perfect BTW. An xray will always find some age-related degeneration that chiropractors just love to tell you is the cause of your problems). It’s just migraine and possibly some temporary stiffness in there that you’ll need to stay on top of.
I can literally bring on a “migraine neck” with an hour of putting some sort of chemical on my scalp be it from a shampoo or conditioner or some sort of sun screen on my face. Very hot water on the scalp will also do it more quickly.
I never get rocking fortunately. That’s one thing I was spared.
I don’t think your hair length is a factor. It’s more likely your scalp that is the trigger. This effect is documented in the science literature and is called “hair wash headache”. If you Google it, you’ll see the abstract. I have the full paper on mvertigo somewhere.
Cheers … Scott
Wow Scott,
I’m glad you told me all this. I have been to an ortho, they did an X-ray of my neck and told me it was fine other than the fact that my cervical spine turns the opposite way which can be a cause of some of my neck pain. I thought he was a quack and just wanted me to go to physical therapy so I didn’t go. I’ve read Dr. Buccholtz’s book and he says the same exact thing you say. It’s hard in this journey to really understand and accept some of the mechanisms of migraine even though I’ve researched so much. I am astounded by the information on the shampoo. I’ve yet to look it up but it does make sense. I highlight my hair every six weeks and always feel awful afterwards. I’ll bet it’s from all the chemicals. I guess if I had something really wrong with my neck it would hurt every day, which it does not. I also do not have any tingling of the hands or pain down my back as I’ve ready most people with neck problems do. I’ve also never had an injury to my neck. I’ve strained it, and pulled the muscle numerous times but it’s more lifestyle such as sleep positions, posture, etc. So I will put the neck issue to bed (at least for now 
I’m curious as to what kind of vertigo you get. Do you have episodes of BPPV? Or more of disequilibrium?
What’s your take on the CSF stuff? My neuro seems to think it’s a possibility but she’s with Duke where they are doing all the CSF pressure research so I’m wondering if she’s caught up in all of it. Is this something “ground breaking” for migraine? I know “in a fog” has CSF leaks and is getting treatment but do you know of anyone else that has been tested for and treated for CSF related MAV? I don’t love the idea of doing a lumbar puncture but I know I’ll never rest if I don’t know.
I swear you are more helpful than 90% of the Dr’s I’ve seen!!!
E
E, when they said that the x ray showed the cervical spine turning the other way, they told me something similar when I had xray on my neck. It was something like it being too straight when it should have been bent or too bent when it should have been straight, (I cant remember which), is that what they told you, if so which one? It would help if I could remember this :?
I wonder if anyone else has been told their neck had the same problem.
Christine
Hi Christine,
They told me that my spine actually curves, or bends the opposite way which causes discomfort. The orthopedist made a big deal that is does not cause headaches or vertigo but what does he know…
Do you have neck problems too?
E, I used to have far more neck problems as I used to have a 3 day migraine then 2 days off then another 3 day migraine, at that time I suffered horrendous neck pain, so much so, I insisted on an MRI which was clear. It was the ordinary x ray that showed my neck to be too (either bent or straight). Along with the neck problems, I got pain into the back of the skull, I still get these migraines now sometimes, like someone has hit me over the neck with an iron bar, I used to feel like my neck had a steel rod pushed through it into my head, really stiff, pins and needs in both shoulders, neuralgia ear to jaw, back of skull, temples. A lot of these symptoms have now gone, but the neckpain comes on quite easily, if I bend my head over to ready in an awkward position etc.
Christine
That sounds JUST like my neck pain. How did yours go away?
I managed to reduce the 3 day migraines, not sure how, it was a slow process, I kept a food and trigger diary for many years,
took a small amount of magnesium and avoided stress (which I had way too much of). Sometimes, I still can have a week of continuous migraine if I have been on a holiday or something and I still get continuous dizzy heads every day also vertigo attacks, but I reduced the 3 day migraines and when they went, the neckpain, pins and needles and neuralgia etc. went.
Christine
I’m glad you have some relief I have daily headaches (not migraines) and constant vertigo myself so I how how much it sucks!
I’ve been aware for quite a while that using any shampoos/skin/food products containing sulphur or petroleum derivitives can give me side effects, including a migraine - so I read the fine print on all products and don’t listen to the salesperson saying “it’s all natural so it can’t harm you”! There are only a few skin products I can use - currently Grown, Tri-Nature & MooGoo! Before using anything new I email the company to double-check ingredients.
Barb