Headaches and Migraines

[LauraChrissy]

I had that too...omg it hurt. Trigger Points will jack you up for sure. Glad you feel better.

[Smol]

Thanks hun
The headache is back, but not like before, just sinus now, which I can deal with. It's amazing how much more energy I have now. I'm starting to think I have an allergy to something that is causing the blocked sinus, so if I can sort that out the headache should go with it. I've gone from being at my wits end to being upbeat and positive in such a short space of time, that I'm a bit on the hyper side I think.

[Little_Miss_Whoops]

I've finally worked out the main cause of all my headaches and chronic neck/head pain after 3 and a half years - TMJ dysfunction! Never even considered my jaw and bite could have been the culprit and I wish someone had told me earlier that it can cause my problems, especially after I tried all sorts of other treatments with no success

I'm off to a neuromuscular dentist this week to start the treatment so i'm very excited (excited to go to a dentist, who would have thought!)

I hope this helps others who are struggling to find a cause of their pain, it might be something to look into

Gentle hugs y'all

[niccysearle]

That's interesting as I have had headaches and chronic neck pain for years now.......and have very "loud" jaws and my teeth don't line up! Keep us posted on your progress and good luck!!

[Smol]

Hmmm still have headache! been a long time now. Had antibiotics for the sinus infection, it cleared my nose but not my head. Had some odd moments where it gets much worse, my right eye gets bloodshot, irritated, watery and sensitive to light, and my nose feels either blocked up or it drips (just on the right). Then the next day or even just a few hours later it's ok and normal headache carry's on.
Also been getting what feels like a short lived very intense toothache from my temple to upper and lower jaw affecting 2 teeth canine and 3rd molar along on both top and bottom. This is also on the right hand side.
Just don't know what to do with myself

[Beth]

Hi! It has been a long time since I posted here - been quite busy. I did post earlier (pg 13 of this thread) but wanted to give an update and share the information we have gathered since then.

As I stated previously, my 12 yo daughter was experiencing very debilitating neurological symptoms - severe occipital headache, dizziness, blurred vision, light and sound sensitivity, nausea, weakness in her limbs, tachycardia and so on. She had spent about 8 months in a darkened bedroom - it was awful. Cervical fusion appeared to be the only option to try and there was no guarantee that it would take the symptoms away. Then I found the Driscoll Theory - an American eye doctor (she and her children have EDS and the scary neurological symptoms that go along) has pieced together existing research and came up with her own theory about the cause of neurological and autonomic symptoms in EDS. She is currently running several clinical trials to prove her theory and will be publishing the results soon.

Briefly, her theory is that the membranes in the brain (which are made of connective tissue) are faulty from birth in EDSers, allowing cerebrospinal fluid to build up, causing high intracranial pressure. This pressure builds up over time until it reaches a tipping point, pools on top of the brain and pushes the brain downwards - putting pressure on the brain stem and other brain structures. The result is the constellation of neurological (Chiari/cervical instability/ brain stem compression) and autonomic dysfunction (POTS) symptoms that make EDS patients so very ill. Mast Cell disease and CSSVI also play a big part in this theory but I am trying to simplify it here.

Best of all, there is real treatment if this theory applies to you - Diamox to reduce high pressure, Zyrtec and Zantac to treat mast cell disease and CSSVI angioplasty if that is your problem. Even if you have Chiari or cervical instability, this treatment may help your surgeries be more successful or let you avoid surgery for now.

After a long and challenging journey, we finally got Diamox prescribed for my daughter - and it has been incredible. Within 2 hours of taking the Diamox for the first time, her headache starting going away and her dizziness was better as well. Now, as long as she takes her medicine daily, that horrible pressure headache is gone, her positional blurred vision is gone and many of her other symptoms are improving. She also started basic mast cell treatment - Zyrtec and Zantac - and that is the other big piece of the puzzle. Her food sensitivities are vastly improved, the nausea and abdominal pain are basically gone and even the POTS symptoms are improving. The theory is rather complicated- it has a lot of 'moving parts' so to speak, but it all makes so much sense when you start looking at it.

This theory may not apply to everyone but, if you have EDS AND headaches AND other neurological symptoms AND POTS, you really should check out prettyill.com. There are videos and articles that you can help you understand if the theory fits you. It is revolutionary and some of it flies in the face of previous medical understanding - particularly as it pertains to the treatment of POTS but it is cutting edge research that is going to change the lives of EDSers in a big way. It has already given my daughter her life back and I would be remiss if I didn't share our success with you.

As always, I would be happy to answer any questions - about the theory itself or our experience with Diamox and mast cell treatment. BTW, these high pressure headaches do share some features of migraines but, obviously, migraine treatment would not solve the problem. Also, this level of high pressure is relatively subtle, compared to other causes of high intracranial pressure, and won't necessarily show up on an MRI until years have passed and symptoms have progressed significantly. Lumbar punctures often make the problem worse and will typically have normal results, since the pressure is not in the lower part of the spinal cord. Do not expect your doctor to know anything about this theory or treatment - you will need to figure this one out for yourself and present the information to your doctor if you think it would help you.

Whether your headache is high pressure or not, I hope you find relief! And I hope this information helps a bit.

Beth

[Smol]

Hiya Guys
I'm finally feeling a fair bit better. turned out I had a corneal ulcer that was causing most of my probs it would seem. I am hoping that once my treatment has finished the headache will finally be gone.

[Little_Miss_Whoops]

Just an update on my TMJ treatment...


I had all the fancy test done with all sorts of wires and gizmo's attached to me to track my jaw movements and tension in the different muscles. It showed my jaw is definitely the cause of my problems and I also had a cone beam CT (I think that's what it was called) which showed that my jaw is sitting incorrectly in the joint and it also subluxes every time I open my mouth! Yikes! The CT showed that my wacky jaw has also caused my C1 and C2 vertebrae to become twisted which would also contribute to all the tension and pain in the muscles.

I just had my mouth orthotic fitted today so I'm slowly getting used to it - very bizarre feeling but nice to know my jaw is sitting in the right place! It's a semi-permanent removable one with a metal overlay - my teeth are quite worn down from grinding and have little enamel left so a semi-permanent orthotic is my best option to be used long term. I hope eating becomes easier over time!

I'll let you know how my head and neck pain are after a week or two, fingers crossed I have some great improvement!

[louloutinks]

I saw a neuro a few days ago about my headaches and hearing problems. Went through all the tests - the pinprick test I had great difficulty with for some reason but now realise that I can feel the sensation somewhere else other than where I am poked.

I had a plantar response on the right and equivocal on the left (I do not know what that means). But he kept going over and over my feet then digging me with a pin in my arms and feet asking if I could feel it and if I was sure I could feel it.

The outcome is he is sending me for an MRA, EMG and ENT referral. He wrote on the form 'lesion in posterior fossa' and he said my vessels need to be checked.

Feel a bit scared at the moment

Any ideas what this 'lesion' is supposed to be?

[bree]

Hi Loulou

Sorry didn't reply to your post on the other postural headache thread, been feeling completely wiped out and pretty awful.

I think lesion can mean like a scarring or some sort of damage?. Can be caused by infection or autoimmune problems. I know it all sounds really frightening but its a good thing your getting checked out, sounds like their being very thorough? By checking your blood vessels they can see if there a little bit twisted or not flowing quite as well as they should as that can cause the pulsing and whoosing in ears but so can high blood pressure and problems with inner ear.

Have you got any dates for tests yet? I know its easier said than done try not to panic about what might not be. I keep telling myself that.

My follow up appt at NNH is now in 3 weeks, bit better than than the original june appt. Will be good to get some answers and hopefully some treatment, salt and water ain't cutting it and starting to have lot of near faints again. Always worse in cold weather .

Hope your keeping ok. Sorry for taking so long to get back to you. Keep me posted on how you get on.

Take care

Bree x

[RainbowsButterflies]

Hi all,
I have severe chronic migraine and have had perpetual auras since April 05. I'm on Topiramate at an epilepsy rather than migraine dose (not the highest, but it needs to go up again) as a prophylactic.

I have have been told no caffeine or codeine which is fine. (I don't drink either). Also a maximum of 8 days per month paracetamol, NSAIDs or triptans - with EDS and chronic pain syndrome?! That's killing me...

[Smol]

Hiya guys
sorry to read you are all still suffering. Just an update to say my headache has been gone since just before christmas. hope you all find someting that helps you

[nemonie]

Hiya,

I also take topiramate for migraines. I've been advised not to drink alcohol (as it increases the side-effects) but nothing has been said about caffeine - some people find it very useful to stop a migraine progressing (you need to find out for yourself if caffeine is a trigger for your migraines by cutting it out and seeing if helps, then reintroducing it and seeing if they get worse).

I've also been advised to take no more than 5x triptan's per month, as over-use can lead to rebound migraines. Medication overuse headaches are probably the reason you've been advised to limit your use of paracetamol and NSAIDs, but to 8 days a month seems oddly specific. Eloise is our resident pharmacist and can probably advise you on this a bit.

[Eloise]

The 8 days a month does seem very low, and maybe something you need to discuss, especially as you do have to treat the chronic pain as well. Also, it is uncommon to have the over-use headache when under-using pain killers for a chronic joint/muscle pain (i.e. not quite getting full relief). It is usually a rebound problem to using them for headaches and so often the advice is to NOT use the pain killers for headaches, but can use with care for your other pains. Also, cycling which pain killers you do use, so that you know you are not overusing an individual one. i.e. paracetemol then an NSAID. Also, limit to a week at a time (which is where I think the 8 days comes from) then have a gap - but until the next month does seem a bit extreme. I would have thought a couple of days and then cycle onto the next pain killer.

As nemonie says - triptans themselves can cause rebound and over-use headaches and migraines, so using them instead of painkillers all the time can be just as bad - there is usually a limit written in the information leaflet.

Caffiene depends on the individual. It can be a trigger for many people - both having it, or suddenly not having it (to the extreme that if my mum had a lay in on a saturday and was more than 2 hours later with her morning coffee it would trigger a migraine!) But on the opposite hand, caffiene is used in many headache tablets as it increases the absorption and action of paracetamol and NSAIDs!

But please rainbowbutterflies discuss your overall pain management with your doctor - you should be able to get pain relief for more 8 days a month - there are ways around it.

[RainbowsButterflies]

I'm seeing my local neurologist on Friday so planning to discuss with him then. Glad it's not just me who thinks it doesn't make sense - I've not been taking pain killers at all unless it's been unbearable which hasn't been helping my spoons.