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Anyone here recovered from chronic (meaning constant rather than frequent) migraine or tension headache? Need some hope...

(28 Posts)
jasperc163 Sun 01-Sep-13 14:39:05

Title says it all really, the more I google the more depressed I get about the prognosis. I appear to have transformed migraines (from episodic) or chronic tension headache or a mix of the 2. Either way, constant headache of varying degrees for 6 months now. MRI scans show nothing, preventatives to date not working, physio, chiro and cranial osteo no effect.

Has anyone had this, rather than frequent chronic migraine (but which does have breaks inbetween)? Family life and job going down the pan and need some hope please?

WeekendsAreTooShort Sun 01-Sep-13 14:43:48

exercise exercise and exercise. honestly it is changed my life. I was on prophylactic drugs and then drugs for the bad headaches and also daily drugs for the not so bad headaches. I have started Shaun T Insanity workouts and hardly get any headaches at all. Also pain relieving cool gel for muscle sprains on neck and forehead and the migraine cap at can get on amazon. migraine trust website talks about B vitamins and feverfew. I tried these but no help and no high intensity exercise hardly take any meds at all. good luck.

WeekendsAreTooShort Sun 01-Sep-13 14:49:31

meant to say that SINCE started HIT exercise headaches now virtually gone and they were awful I promise you

superslim Sun 01-Sep-13 15:00:52

I did have constant headaches for many years until an acupuncturist I was seeing for weight loss said she thought all sweetners were horrendous so I stopped drinking NAS squash, fizzy drinks, yoghurts - anything with sweetners in and I have not had a headache since - may not be the answer for you but worth a try

littlemisswise Sun 01-Sep-13 15:06:41

Do you take pain relieving medication for migraines/headaches everyday? The only reason I ask has anyone spoke to you about medication overuse headaches?

I get around 15 migraines a month, sometimes more. I have seen one neurologist who has referred me to another one to see about having Botox to treat them. Could that be an option for you?

jasperc163 Sun 01-Sep-13 15:26:52

Thanks everyone. In answer to various questions, no not taking pain relief generally so def not a rebound issue - have just come off 3 week elephant steroid dose to try to break the pattern but it just took edge off rather than stopped it. Currently on preventatives - topiramate and nortriptyline. Avoid sweeteners, have also tried no gluten and dairy. Feel too crap to exercise as there is no break and it tends to make it worse? How did you exercise with a bad head? Also did vit b/mag/feverfew few months back before I gave in and started taking neuro's prescriptions. Had one visit to acupuncturist but hated it and felt worse , but I don't like needles very much. Botox no doubt next on list!

WeekendsAreTooShort Sun 01-Sep-13 15:29:22

I just sort of went for it to be honest and then is started to help with time. I did not find anything else that worked so decided just to try and ease myself in. once started high intensity I really noticed the difference and now when I don't do it the headaches creep right back...I do symphatise I had tried lots too

littlemisswise Sun 01-Sep-13 15:32:20

What dose of Nortriptyline and Topiramate are you on? Is there scope to increase them?

Spookey80 Sun 01-Sep-13 15:33:33

Interesting thread. I think you're symptoms sound alot worse than mine were ( but not when I'm having them iyswim) but I did have success with preventers in the form of amytriptalline and nebivolol (beta blocker). And I would say I had the best six months of my life, I had never felt so well. I then decided to try for a baby and came off the meds to conceive, and I'm now 12 weeks and am recovering from almost 3 weeks of solid pain,, but hoping this will settle when my hormones stabilise.
Do you have a good GP because that is a necessity.
I rally feel for you and send you my best.

CockyFox Sun 01-Sep-13 15:35:48

DH has constant pain, he is currently having some sucess with amitryptaline and is having the occasional pain free day.

jasperc163 Sun 01-Sep-13 19:42:36

Littlemiss- only 2 and half weeks into topiramate at 50mg so in theory yes but at moment feeling awful and head possibly worse than when not on it. Been on nortriptyline about 2 months but got up to 40mg and had to go back down as ended up wiped out and with horrific headaches (needing steroids) so am stuck at 20mg. Tried amitriptyline back in April but turned me into zombie (glad it's helping your dh cocky fox).
Spookey - I hope things settle down you. I had v few headaches during pregnancy but its too desperate a course of action for me !! gp generally useless but neurologist surprisingly understanding for a fifty something bloke. Bottom line though is they have no cure and I am getting very scared about my future, my family, losing my job...

littlemisswise Sun 01-Sep-13 21:18:24

Have they tried you on beta blockers, something like Propanalol or Atenolol? They could, also, add Gabapentin or Pregabalin into the mix as well.

Another thing they could try is referring you to a pain specialist rather than a nuerologist. They are much better at trying different combinations of drugs than most other specialists.

You have my my sympathy. I have chronic pain conditions as well as the migraines, it totally takes over your life. I can't work,DH gets pissed off. I can't make plans. I have been trying to find out what in my diet causes the migraines, so far it is chocolate, alcohol, too much caffeine, citrus fruits, low blood sugar, dehydration and being tired but the pain stops me sleeping!

littlemisswise Sun 01-Sep-13 21:20:03

Another drug that has been mentioned to me, and has helped DS1 in the past (he has cyclical vomiting syndrome which turned into migraine) is Pitzotifen.

jasperc163 Mon 23-Sep-13 21:23:29

Upping this as the topiramate/ nortriptyline combo still not working. Next stop occipital nerve block consultation in 2 weeks but beginning to give up hope ��Antone had this or any other miracles ?

jasperc163 Mon 23-Sep-13 21:24:32

Oops meant anyone had this!

RawCoconutMacaroon Mon 23-Sep-13 22:39:53

Google "Tyramine" I had no idea that it was this (its natural, caused by aging/decay of foods), that caused my very very frequent migraines. Everyone will have tolerance for x amount of it it a day - exceed that, and you get a migraine. The trigger amount might come from a large portion of a food, or several smaller doses of different foods...

For me, worst is aged or blue cheese, aged meats, preserved olives.

Yy to pp who mentioned headache caused by regular use if pain killers, something type need to watch for.

jasperc163 Wed 25-Sep-13 15:08:08

Thanks RawCoconutMacaroon - does that mean you did the diet then?
It is possible that there was some degree of rebound going on originally but no chance now as only take otc painkillers or triptans very occasionally now (just all these horrible preventatives which only take the edge off but don't get rid of it).

doterramom Wed 25-Sep-13 18:34:55

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

therzinosaurus Wed 25-Sep-13 19:03:11

Do you clench or grind your teeth when you sleep? Have any problems with your jaw?
I have suffered with constant headaches for years and have hopefully finally found a cause after seeing numerous GPs/consultants/dentists. Am awaiting an op to sort out a displaced cartilage in one of my jaw joints.
You have my sympathy, it is so wearing being in constant pain and nobody being able to offer you a solution.

EvenFlo Wed 25-Sep-13 19:16:09

Beta blockers were an absolute life saver for me, had to go on a pretty big dose but was totally worth it.

jasperc163 Wed 25-Sep-13 21:49:42

thezinosaurus - I had a mouth guard (or whatever they are called) made many years back by the dentist as i was grinding my teeth (no headaches at that point. In fact i never really used it as i hated the feeling. I dug it out after all this started and wore it for about 6 weeks but with no real improvement so assumed that it was unlikely to be the problem. I suppose maybe it would be worth me having a chat with the dentist in case.
EvenFlo - betablockers are the one i havent really tried for this as i have used them occasionally (maybe 3-4x a year for anxiety when i have to do presentations etc) and they make me feel very slow after and this is at 40mg (I once tried 80mg slow release or whatever they are called and felt terrible) so i assumed that i wouldnt be able to cope with the doses required for headaches. Did they have side effects for you and which one did you take? Did you have occasional or more constant headaches? thanks

RawCoconutMacaroon Thu 26-Sep-13 06:43:14

Jasperc... I sort of did the diet almost by accident (I adopted a Paleo/primal way of eating for other Heath reasons), and that made it much easier to spot the trigger foods (they are mostly not in paleo). And then I stumbled on an article about migraine that mentioned tyramine.

therzinosaurus Thu 26-Sep-13 13:29:35

jasperc - mouthguards unfortunately don't work for everyone and if you have something wrong with your jaw they can exacerbate the problem. if you speak to your dentist or GP, they should be able to refer you to the maxillofacial dept at your hospital. Do you still grind your teeth? At least they could rule out a problem with your jaw and also help with solutions for the grinding.
I am guessing you have probably had blood tests to rule out anything there?
From my experience I think it is hard for people to understand what it feels like to have a constant headache and how debilitating it can be. I saw a doctor recently who was the first medical professional to say to me that it must be horrendous and greatly affect my quality of life and I felt like she really wanted to help me. It made all the difference. I think even close family and friends can be very unsympathetic, I have lost count of the number of times I have been told to just take some paracetamol and that it can't be that bad!
Hope the occipital nerve block consultation can shed some light.

jasperc163 Thu 26-Sep-13 19:43:53

Thezinosaurus, are yours really constant? If so you are one of the few others I have come across (wouldn't wish it on anyone as you say, and no, few understand the relentlessness of it both physically and psychologically incl some friends who just appear bored with it now!). Gp useless, neuro more understanding about the mental effect. I have an ENT referral in couple weeks supposedly for unrelated problem - fluid in ears despite no history of this kind of problem and intermittent ear ache but all seems a bit of a coincidence to me. Would they consider the jaw too or not their area? Occipital appt a week before this. I hope your op does the trick anyway!
Initially had no blood tests at all (incredible really) and had to push for them and then for referral privately for borderline thyroid results and lowish but still inconclusive - have had this retested today.

Raw coconut - I have tried to cut tyramine out but never lasted more than couple days. am veggie so whole paleo thing hard but v glad it worked for you.

therzinosaurus Fri 27-Sep-13 10:11:20

jasperc - yes unfortunately they are constant, every minute of every day no respite. We seem to be a medical mystery!
I was on amitriptyline for 18 months which helped with numbing the pain and taking away the intensity slightly but it was still very much there, it did however highlight my jaw pain. I think previously the headache pain was so bad that it masked the fact that I also had jaw pain if that makes sense. I have since stopped the amitriptyline for a number of reasons and only use anti-inflammatory gel to help with the jaw pain and I am holding out for my op and somehow getting through each day. I am trying not to think beyond that and have no idea what I will do if it doesn't solve the headache pain.
I don't know much about the ear side of things or thyroid results I'm afraid, is your balance ok with the fluid problem? I don't think ENT will consider the jaw, as far as I know it is only maxillofacial that deal with it.
Is your DH supportive? Or do you have someone who can go along to appointments with you? Sometimes I think it is useful to have someone who is on your side when you attend clinics, they can stick up for you and push more for investigations, which can be hard to do when you are on your own and the doctor is just trying to get you out of the room as quick as they can.
Sadly I think there are probably others like us who have been fobbed off and just somehow put up with the pain. You could also ask for a referral to a pain clinic if your hospital has one, they might have ideas on potential causes.

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