Hi Everyone,
I’ve had MAV for about a year and a half now. I just had dizziness up until 2 months ago, then I started to have tension headaches and kind of a new disoriented dizzy feeling. Right now I’m taking nortiptyline and I’m up to 20mg, I’ve noticed no improvement up to this point. Anyway, has anyone else had headaches like this associated with MAV? Do they eventually go away? I would appreciate any comments or past experience you’ve had!
Thanks,
Seth
Hi Seth,
I meant to get to your post here earlier but haven’t had a chance. Thanks for your PM. Figured I’ll answer you here.
In my opinion based on my own personal experience – a view which is shared by Drs David Buchholz and Nicholas Silver – most headaches that people class as tension type headaches (TTH) are in fact migraine based. I can tell you from my form of MAV that the headaches I get fit the TTH definition. Bilateral, squeezing low-grade but sometimes high grade head pain with disorientation. The pain usually manifests in the neck for me and what I feel in my head is most often “referred” pain. I can trigger this sort of headache within 1 to 2 hours of eating an offending food or if I put some sort of chemical product on my face such as certain sun screens. I find many of these kinds of headaches to be quite debilitating and can also come with some light sensitivity as well. Silver will tell you that true TTH pain does not generate these levels of discomfort.
It’s very probable that your migraine has simply transformed from less dizziness to more pain now. It may flip back again unless the meds and lifestyle changes wipe it out. I have gone through numerous cycles like this over the years.
So, for me, setting off a migraine–TTH (neck migraine?) usually requires some sort of trigger or it could be because there are already inflammatory hot spots in my neck. The last bad bout I had was due to my cervical spine being locked up at the C2 level. The pain in there was triggering headaches and dizziness and I was super tired all the time. So make sure you don’t need some physiotherapy in there to loosen up a stiff cervical joint and that you’re not inadvertently exposing yourself to a trigger you are unaware of. If you look through the sticky post above from Silver, you’ll hear him mention the TTH stuff. It’s also in a Powerpoint presentation in the archives and in that thread (found by Marci).
Best … Scott 8)
Hi Scott,
Very interesting. I’m actually seen a chiropractor right now; he informed me a couple of weeks ago that my C1 vertebra was out place. I’ve had 6 treatments with him and May have noticed just a slight improvement in my headaches. So your headaches go away altogether sometimes? So yeah, hopefully the nortriptyline and the chiropractic work can do the trick for me. My neck is a lot less stiff than it used to be but my symptoms mostly still remain. It might be in my head, but I think the 20 mg of nortriptyline that I’m on is giving me some slight relief. However, I really don’t want to get a head of myself. Thanks for your insight!
Seth
Seth,
Just a word about chiros. I went to one for a very long time with recurrent neck issues around C1 and C2. He was very good and a nice guy; however, I just kept pouring tons of cash into it and never getting any solid results that would stick. And then I saw a physiotherapist at the University here who told me exactly what was wrong, understood it could be a migraine trigger (chiro didn’t seem to get it), and fixed it in TWO sessions. Gone. I haven’t had a neck problem now in months and months and have saved myself a packet of cash.
Anyway, keep that in mind if you aren’t getting anywhere with the chiro.
Cheers … Scott
Hi Seth,
It might not be relevant to you but I started nortriptyline 10mg 5 weeks ago - after 2 days on nori I had severe headaches - I took them for TTH but they never really left as my headaches used to do. After 2 weeks on 10mg I lowered the dose to 5mg (thinking I might just go slower on the nori) - and I haven’t had a headache since. Was just wondering if your headaches could have anything to do with nortriptyline???
Best
Christina
Scott, I do have a stiff neck. Could that be causing the headaches I’ve been experiencing? Did it fix your headaches? The headache I’ve had has been chronic day to day and seems to increase and decrease in intensity from time to time, but it’s constant. I’ll have to think about the physiotherapist.
Thanks for your response Christina. They put me on nortriptyline because of my head aches. Actually when I was on verapamil that was when the headaches came on. Not sure why a migraine preventative didn’t stop the headache from coming. I plan on sticking with nortriptyline with hopes that as I increase the symtoms will go. It hasn’t made my headaches worse up to this point.
Seth
Scott,
What type of therapy did the pt do on your neck, can you describe it.
Scott, To add to Steven’s question, what type of physical therapist would you need to see? Would they have a special name? I’ve had quite a few appointments with the chiropractor and I don’t think I’m getting anywhere. I think I asked this in my above post, but did it take away tension headaches?
Thanks again,
Seth
Seth – she was not any sort of specialist in any particular area, just a good physiotherapist. When I explained the problem and how too much messing around with my neck could make dizziness worse, she said “we’ll try a few different things and see which one works”. She got it right the first time by palpating the stiffened joints. Years of seeing the chiro didn’t fix this and she killed it in 2 sessions. I always end up getting the best results from the evidence-based approaches. I’m done with the alternatives – for me they have never worked but only emptied my bank account.
Once the jammed up spine was moving again, the tension headaches dropped off. I still get them but nothing like before.
Scott, thanks for the advice. I’ve decided to give the chiropractic attempt after 6 visits, I honestly don’t notice any significant change. I took your advice and I scheduled an appointment with a physical therapist. By the way, did the meds ever help your tension headaches?
Thanks,
Seth
Hey Seth,
You know what? I don’t think any med that I’ve ever trialled did a damned thing for my headaches apart from some making them worse – most notably Cipramil. The way I keep the headaches away are through lifestyle mods mainly. If I eat the wrong foods, if I’m over tired and screw up my sleep patterns, or if my neck is jammed up, then headaches rain down on me. Actually you know what else was a major “tension” headache killer (I put tension in quotes because they seem like tension headaches but aren’t) for me? I moved my desk space at work out of the fluorescent lights and into an area where there is NO light except for natural daylight. It has made a HUGE impact. Certain odours/ smells/ fragrances will also trigger a headache if I’m symptomatic so I avoid them. If I get on the bus in the morning and I’m sittng beside someone who stinks of Chanel No. 5 I leg it and move somewhere else fast. :lol:
Good luck with your physio. Explain your migraine history and how you feel neck tension contributes and may also be a result of migraine. A nasty viscious circle that you need to stop. If you find the physio session makes you feel worse, tell her to take it easy if a second round is needed. The good thing with a physio is they will tell you what’s going on and not give you the spiel that you need to keep going for “maintenance” like a chiro will. I personally think that’s bull. Other things I do is massage my own neck sometimes if I think it’s getting tense. I’ll put two pillows down on the bed, lie face down and gently palpate the same area the physio did to keep it moving in there. I’m going to get into doing some yoga again here too once or twice a week. They do these sessions here at Bondi right on the beach. Anything we can do to reduce tension and free up the joints has to help.
Okay thanks Scott,
The way I would describe my tension headache to you is it’s constant. I’ve felt a headache for 2 months straight nonstop, it is really annoying. It increases and decreases in intensity depending on the circumstances. I wish it came and went because then I would get relief at times. Anyway, I’m going to stick with taking the nortriptyline and see the physiotherapist in a few days.
Hey Seth,
How would you describe your Tension headaches? I have the silent type Migraine condition. The right side of my head tends to feel tension and also has this squeezed feeling. Hardly any pain, just tension. I use a small amount of anti-anxiety medication once a day to Melt some of this tightness. Also with the tension, i also feel motion in my head. It sometimes feel like my heart is in my head if that makes any sense.
If i have a regular painful run of the mill headache i take Motrin and it takes care of it but if i have increased motion and tension in the head Motrin does not help. So that is where anti-anxiety med’s help. By the way, this tension/motion is 24/7.
Please let me know more about your symptoms.
Joe
Hi Seth
I used to get tension type headaches, then not many at all. Then chronic daily dizziness set in with few headaches at all. Fast forward 3 years of 10 doctors, 5 misdiagnoses, and voila I’ve been diagnoses with migraine variant/atypical migraine of sorts. Anyway, in addition to taking a preventative medication, I am also doing psysiotherapy on my neck and making great progress. The other forum members are right about the C1 and C2 neck joint contributions to head pain. I’ve got a number of myofacial issues that are being addressed for the first time in addition to some postural adjustments, but NONE of these were successfully nailed by any of the three chiropractors that I saw over the years… Let us know what happens!!
Gail
Hi Joseph and Gail,
Thanks for your posts, any advice that you two have is greatly appreciated. Joseph, I would describe my tension headache as a squeezing sensation, I notice it on both sides of my head and on the top of my head. I have a strange dizzy sensation (probably motion) on both sides of my head. I notice it mostly when I walk or run. I figure if I the tension headaches go away so will the dizziness. My number one problem for most of the time has been severe visual dizziness, that right is probably 95% normal. I’ve been taking nortriptyline for 2 weeks now, the last 2 days my tension headaches have started to feel a bit better. That may mean the medication is helping a bit. I’m going to have my first physiotherapy appointment tomorrow. I think my neck has a role in this. Gail, it’s exciting to hear that the preventative medication and physiotherapy has worked for you. I hope I can make progress on that as well in the coming days.
Seth
Hey Seth,
I Definitely have the squeezing sensation mixed in with motion (motion pulling me in different directions,like it has a mind of it’s own). Sometimes it feels like i just got off an amusement park ride. As far as my head is concerned it’s mostly the Right Side and top of head. What helps me most is Anti-anxiety medication…a small amount daily. I understand that benzo’s help to melt down the inner-ear nerve. As far as the dizzyness is concerned…i always feel like i’m moving to some degree but not my outside world…only me. A small amount of Benzo med helps to melt/ease the motion and squeezed feeling in my head.
Joe