Migraines that won't go

Hi I had a lumber puncture 4 years ago and they drained the fluid that's why I kept thinking its pressure again but my neurologist registrar just said see you in 12 months but it's just getting worse. I am speaking to my doctor tomorrow not that they have been any use what so ever except for writhing prescriptions over and over again. I am not seeing my neurologist until February so o am mentioning the Botox injections to them. I think my neurologist has prescripted me nortiptlyne I need to just get the prescription from them tomorrow

Hi Amy,

as a suggestion NAG your GP to refer you for an MRI, this could throw up some answers.  The trouble with GP's is they dont have a lot of time to spend with us and can fob us off.  Be firm with him and ask to get that referal.  You could try and get Flunarizine too

I literally speak to a doctor once a week if it's not migraine related it's my crohns kicking off causing me trouble. I'm speaking to one of them tomorrow she's usually a good dr and listens so hopefully she will request one for me unlike the other who laughed when I said 'my massage therapist told me I have trapped oxygen which is causing me migraine' she thought it was hilarious but someone posted something on here saying the same thing 3 days later

Hi amy,

Just a thought and I know you seem to be bombarded with advice here and there, but have you had a gluton intolerance test?  I imagine you have with crohns, but I have been told it can also be a cause of migraines, that said I had a test and my dr confirmed that it could be a contributory factor in migranes, but I am not intolerant, so I have to deal with my migraines as best I can.  I get hemiplegic migraines and cluster headache, not a good combo as what treats one doesnt help the other!

Hi Julie I am in the U.K. Wishful thinking about the US! I use to take sumatriptan or rozatriptan at the first sign of a migraine but I can't lie down when a migraine comes on because most of the time I am either in work or I'll be at homeboy so o can lie down. I have to be careful with magnesium products as I have injections for a deficiency every 3 months and some things interact inwould have to find out on that one when I speak to my doctor tomorrow. I have begged for a hormone balance blood test as I think that's one of the main causes I get migraine as I have a lot or hormone issues lately but my dr refused to test

Hi Amy

Your doctor refuses to test for hormones ? I think I would find a different doctor, pritty routine over here to be tested once a year after you reach 50, and younger than that its a pretty routine test doctors have no issue with.

With the Max Alt, going for a rest is ideal but if you are at work and cant I think Max Alt would still help at least worth asking your doctor.

Do ask about the magnesium with your doctor as I think it would help you, what about CoQ10 have you asked your doctor about that ? It increases blood circulation and again many find it help. I am not a doctor and this is not medical adivse just what works for me

Yes she refused to do the test because I am too young and normally they don't test hormones until your go through the menopause. I only asked because I have a lump on my inner thigh high up and it turns out to be an infected hormone gland (apparently it wasn't enough to see me over) so I had to visit an emergency Doctors surgery to get it check as it was extremely painful. But yes she has refused to test my hormone levels even though I think they are everywhere because that's how I feel she still won't test.

I will ask this one tomorrow when I speak to her and ask if I can try that I know the one I've been prescribed is to treat high blood pressure but works for migraines

Can you ask for a referal to a gynaecologist, ?

I have just asked them when the called me.. waste of time speaking to them!! No help at all! I explained everything that I could over the phone. I was offered an appointment on Friday but that's with the only available doctor who is a male not my usual doctor. She said it's unlikely to be any kind of infection blah blah blah mentioned my migraines and she just said plenty of fluids, regular meals and breaks away from my computer screen not that I am not already doing that! I feel like I am talking to a brick wall with them. Probably because I speak to them so much it probably sounds like I am making it all up but I know it's there and not all psychological. Does my head in that they won't listen. I have 2 UTIs a month without fail and they still don't treat that

Are you taking DMannose to prevent UTIs ?  I think I would be changing doctors.

Hi Amy,

This is the trouble with some drs they dont always take us seriously.  You are not making it up we all believe you and so should the drs. I think if you cant get a better GP, when your symptoms get bad, go to emergency or if its really bad get an ambulance, the drs there will treat whats presented and hopefully you will get a neurologist to treat your migraines and gastrolgist to help deal with Crohn's.

Keep us updated Amy and good luck

Hi I am under both neurologist and gastroenterologist both which I have follow up appointments for but not until next year I have asked if they can be moved forward but the answer was no because of available spaces. It just seems like one thing after another lately. If it's not migraines it infections or my crohns kicking off. Never ending

thats way too long to wait.  Just asking the question do you think you might be able to go private?  I know thats the easy answer, but just thinking thats all.  I am trying to think of different things to help you Amy, but its tough.  The specialist I see has a nurse practioner that I can contact by phone or email, they can give me ifo over the phone and they can also go back to the specialist to get be more important answers,  I dont know if you have that option?  Certainly you need to be seen sooner than next year.

I will continue thinking and if I come up with something I will get back to you.

In the meantime if you live within a reasonable distance to London, I have to travel about 80 miles, then consider seeing my specialist for migraines at the national neurological hospital and maybe you can see a specialist for your crohns too

I have considered private it's just the expenses that follows. I live in the north west so London is about 5 hours from me I am under the Walton centre and they are suppose to be one of the best. I am making an appointment with a senior doctor and putting my foot down now and if they don't do anything I will contact my consultants myself and ask for the next available appointments. It's can't carrycot on. I feel like a gunner pig trying all new medications to control these migraines it wouldn't bother me but I can't cope with the shooting pains in my arm the lose of the sensation in my arm and hand and the constant mood swing

Those symptoms you describe, sound typical hemiplegic migraine like I get, they hospitalise me, but had none since last Janurary. I really have found that Botox is good for me as well as flunarixine.

I hope you get to see somebody soon Amy, like you say you cant carry on like that.

I will be intersted to hear how you get on, so please keep us up to date,

Good luck and hope all goes well.

Best wishes and take care

Waste of time seeing my doctor today. They prescribed me candesartan and told me that I just need to bare with it and it will ease off.. 12 days I've had it for now! Think I'll change GP surgery since they couldn't care

Thats crazy what they said Amy!  Yes good idea to change drs get a 2nd opinion.  Something you could try and its something that I have been told I can use by my neurologist.  try taking 3x300mg of aspirin unless you are not allowed.  But do take it after a meal as it can make your tummy sore.  I have a dodgy stomach but if I take it after food its ok.  Be interested to hear if that helps at all.  When you get a new dr, try telling them that sumatriptan is good you have been told, to get rid of the headachem so too is verapamil and pregabalin for preventing the headaches.  You can get sumatriptan over the counter, its called Imigran they will ask a lot of questions, well some do. 

Good luck Amy, do keep us up to date, I am keen to know how you get on.

Take care and best wishes

I was sick last time taking aspirin and it made my headache worse. I am calling neurology by next week if it doesn't go and asking if they have any cancellations for this year see what they say. It's worth a try I guess. I wouldn't want to leave these Drs one is amazing to me it's just I got a junior who couldn't care less but my normal dr is lost at what to do

Hi Amy,

Seeing a neurologist is what you need asap, you need to get an MRI at the very least.  I think its about £200 for first consultation if you want to try private, might be worth it just to get in then say, please get me in on the nhs so I have an MRI and all the other tests.  Just an idea.

Sorry aspirin is no good for you it was just a thought.

Botox is what I have and it works like a dream for me.

Finally after spending yesterday morning sitting in A&e with chest pains turns out I had an allergic reaction to candesartan so finally I have been given pregabalin 25mg to start in 10 days time. They want me to try and get out the candesartan out of my system and get all other meds out of my system too. Still got shooting pains in my arm and a banging headache but at least I have been given pregabalin to Rey so I am hoping I don't react to these

Hi Amy,

Glad you are getting somewhere.  Its interesting as I get chest pains too and they never find anything wrong with my heart or lungs.  You need something to take that pain away, the pregabalin is good, but just so you know I take 300mg twice a day, so you know what state Im in.  Did I talk about sumatriptan already?  Sorry if I am repeating myself but this is really good.

when did you say you will see the specialist?  They need to investigate the shooting pains down your arm for sure.  Btw you can get sumatriptan from pharmacy, its called Imigran

I've had sumitriptan my dr stopped me from taking any pain relief and I have asked local chemists and they have non over the counter only some chemists do apparently. I am seeing my dr ever week to monitor the pain after I complained. Apparently the migraine I'm having is effecting my nerves as their test with the little hammer didn't respond so well on my right side.

My neurologist appointment is in February but I am trying my best to get this moved forward.

Wow 309mg is a lot they are only starting me on 25mg and they will increase it every so often

Why did dr stop sumatriptan Amy? Yes some chemists will let u have them some wont. Try sainsbury chemist or another supermarket one, they often do. You need something like that. U can also try solpadeine max, from chemist too. Good luck keep me updated

They stopped it because of a painkiller overuse headache I got 3 months ago. They prescribed me sumatriptan every day for a week then rizatriptan for a few days until they realised I had too much with it being an acute medication they just stopped it and my neurologist doesn't want me to medications because of my bowels it can have an effect on them too

Yes I would have problems with my bowels if I didnt take meds to keep me going.  The high dose of verapamil I take is causing it.  I may have to have an operation to have an implant put it so it turns off the pain.  So you need to see how pregabalin goes before you try anything else.  If you not tried Solpadeine max before this could be an option to help you ease the pain.  I had that to start with, well stronger version from dr. Did you know you can get a type of triptan that sprays up your nose, called zomig?  This might be somthing to think about too, not going into the tummy.  Just a thought  I am interested to hear how you get on Amy, so please keep me updated.

Best wishes