Please can anyone help? Can't get in to see GP and in tears with pain!

[lacrimosaangel]

Hi, I'm new here and signed up because I really need some help. A little background: I've had headaches continuously since I was about 14 years old and my various doctors have never investigated this. They've put me on several medications over the years, including amitryptilene, co-codamol, voltarol (diclofenac) and naproxen. Nothing has worked.

I've had several migraines in the last year that have not subsided with medication but for the last two days I've had a very severe ache that is totally different to anything I've felt before.

The entire left side of my face is really painful, but the area around my left eye socket is just pure agony. My eye keeps watering and it feels like someone has smashed me in the face with a hammer. I am constantly feeling sick and just want to sleep all the time. The pain is making me cry and it's the worst pain I've ever experienced. I've got a 2 year old at home on my own and need to be able to look after her, but I cannot get in to see my GP. They have no appointments available due to the weekend and I've tried everything to shift it and nothing helps

I went to the pharmacy yesterday and they recommended sumatriptan and gave me 2 tiny tablets, one to take immediately and one 2 hours later. It was only after the second was taken that I saw any relief and even then it only reduced the pain by about 50-60%.

The gp suggested in the past that I may suffer cluster headaches, as I used to get similar pain in the back of my head but nothing was given to prevent them.

Would I be able to visit a walk-in center tomorrow or perhaps this afternoon and have someone see me to discuss this and perhaps prescribe something to help? It feels like my head is going to explode and I can't cope anymore

[MaryF]

Hi Cluster Headaches do need investigation, but another avenue, do any other members of your family through the generations have either autoimmune diseases, including Thyroid, and or migraines, early strokes, heart attacks or DVT etc? Or history of multiple miscarriages, if any of this rings a bell come back to me please. MaryF

[lacrimosaangel in reply to MaryF]

Hi, thank you for your reply.

I've been to walk in and they've suggested going back to my gp for scans etc, back on sumatriptan until I can get a gp appointment. He said it could be Trigeminal Neuralgia, which I've just googled and it doesn't sound similar, it's constant pain not shock like pain.

As for your questions, I have been diagnosed with Fibromyalgia and have myself experienced multiple miscarriages/ectopic pregnancies (with 2/6 children surviving to birth) could it be related somehow? My gp are very much the "throw pills and leave it" kind

[MaryF in reply to lacrimosaangel]

Right I suspected as much you probably have Hughes Syndrome/APS, stay on this forum as a lot of us are on this one, but also on the one on here for Hughes Syndrome/APS. This is a condition frequently missed by the medical profession including neurologists, scandalously so. I enclose, the symptoms, the associated diseases, the very important blood tests,

(take the forms to the hospital), as the samples taken are time sensitive.

Also a debate from The House of Lords, and a short film. When patients land on our forum other than getting the blood tests done, I also get them to check their Thyroid, which is often dismissed as Fibro, also to check levels of B12, D and Iron. I take 75 mg of enteric coated Aspirin in the morning on full stomach and same in the evening, this cut my migraines down an awful lot! It is not unusual to have Hughes Syndrome/APS, SJogrens Disease and a slow Thyroid. Hughes Syndrome is a cousin of Lupus!

1. hughes-syndrome.org/about-h...

2. hughes-syndrome.org/about-h...

3. hughes-syndrome.org/about-h...

you can give this debate to your GP when asking for the blood tests: publications.parliament.uk/...

youtube.com/watch?v=V3J8BLk...(Not working as expected?)

ps I notice people who get low in B12 often end up with ,Trigeminal Neuralgia, us lot often have gut issues, for instance many of us have ditched gluten.

MaryF

[lacrimosaangel in reply to MaryF]

Thank you Mary, would this have been picked up on a full blood workup and an ana? I had one recently for severe bone pain and was told that I had a severe Vitamin D deficiency,

[MaryF in reply to lacrimosaangel]

Vitamin D deficiency makes any disease worse, and ANA would have been for Lupus testing, however unless they thought to do those tests they will not have done so. The sooner the better. MaryF

ps your vit D needs to sit at 75 or above.

[lacrimosaangel in reply to MaryF]

My vit D was 12.2 and they said everything was clear.

Am sat here screaming because the pain is so bad. Need to sleep but my bf isn't home for another 3 hours and I have the 2yo at home

[MaryF in reply to lacrimosaangel]

ok, get them to do the other tests! The three I sent you, best of luck believe me I have been there in your situation, best of luck to you. MaryF

[lacrimosaangel in reply to MaryF]

Hi Mary,

Just wanted to say thank you again, I'm reading through all this info and it is making so much sense, I don't believe that I could have so much wrong with me and it would all be unrelated. I'm going to get the gp to agree to test me, in particular, the pregnancy bit was eye-opening, even when I have been pregnant, I've had such terrible pregnancies, fainting, passing out and turning blue, bleeding issues and some pretty horrific bp issues.

I've had piercings and instead of clotting properly, my blood has turned into a jelly, turning the consistency of the jel that's in pork pies.. I'm wondering if it could be Hugh's that causes all my other pains as well?

[MaryF in reply to lacrimosaangel]

Absolutely. MaryF

[1251]

If your head is that bad go to E A at the hospital .Tell them you have a child to look after and your heads are that bad.i know what your suffering.1251

[jackiesutton62]

Hi I'm sorry you're in such pain. I would say take yourself to A&E. I doubt the walk in will be able to do much. Sumatriptan is my saviour when the pain is at its worst but can cause rebound problems causing more headaches. As do a lot of tablets. You need to see a Neurologist who are experts not GP's who know a little about a lot.

Take care

Jackie x

[princess-chiobits]

I'm sorry to hear your pain: I have a very similar case to yours unfortunately and the GPs aren't actually any help either as you've stated- numerous medication and they don't seem to help at all.

Possible a walk in centre can help but as stated below look at the forms and see and go to your gp to discuss your outcome.

I hope things work out and please let me know anything as I'm similar

[lacrimosaangel in reply to princess-chiobits]

I have a gp appointment this afternoon, so I'll report back and let you know what they say

[jockeye1]

I suffered from CH and the only pain relief I found was "IMIGRAN SUBJECT INJECTIONS" but are not readily prescribed due to their cost. I was told that this is the only cure. I also found LITHIUM CARBONATE was the only prophylactic that worked for me but both must be given by your GP or Consultant, but, I think you have to almost force the doctor to give you the injections.

[Cally01]

If you are in that much uncontrollable pain go to A&E i wouldn't go to a walk in you need a specialist once you tell them you can't cope with your wee one they'll do something.

Good luck 😃

[lacrimosaangel]

Thank you everyone, I sadly can't get up to a&e as I have nobody to look after my little one and I could be sat up there for hours. I've been taking the sumatriptan at the first sign of a headache and then a second 2 hours later, it's been working to reduce the pain by about 60-70% but still not going completely, and I have still got twinges when I wake up.

I have a doctors' appointment this evening and I'll be passing along all the information that I've been given. Reading up on the info the gp at walk-in gave me, I really don't think it's trigeminal neuralgia and still think it's a case of CH, they happen at near exactly the same times every day, which according to the NHS website is one of the signs of a CH and not a typical migraine attack. They seem to hit about 11am and dissipate by 4pm. I'll pass those other links along and make sure I request they test for the other things, hopefully I'll have answers soon, I've been fighting constant headaches for 14 years and nobody has ever done anything about it!

[Cally01 in reply to lacrimosaangel]

Don't give up, stay on this site. It's the best thing i done. You will be able to tell your GP what you need and not the other way round , sadly the GP's are at a loss with migraine / CH .

Most of us find a way of coping on our own. There isn't one cure fits all but between us wee find a way.

Good luck and remember we're here 😃😃

[lacrimosaangel in reply to Cally01]

Thank you, my gp's are pretty useless when it comes to asking them for something. I recently had a FBC, U/E and ANA tests done at my request due to the level of pain I was in. I'd been pushing for months and when the tests came back they discovered my vit D levels were 12.2, if I'd not have pushed, they wouldn't have done the tests and I would have been in serious trouble.

I get the feeling that when I go to the GP this afternoon, they will just refuse to do the tests due to lack of symptoms. They don't have all my medical records either, no record of my fibro diagnosis, nor my previous miscarriages. I went there last year due to a MC, (+ve test followed by typical MC symptoms and a week of heavy clotted bleeding.) They dismissed it because their test was negative and because I didn't go to the hospital (epu won't see you without gp referral!) they're honestly useless

[Cally01 in reply to lacrimosaangel]

Absolutely shocking 😠😠 keep pushing They'll do it if even to get you off their case 😄.

It's terrible how much wee need to fight for the right treatment.

X

[lacrimosaangel in reply to Cally01]

It really is but they have on record that I've been several times for headaches. They have to do something!!!

[Cally01 in reply to lacrimosaangel]

Write down the tests MaryF gave you and insist they do the sticky blood tests.

I know GP's are under the cosh but it's our bodies they should listen!!

Keep us informed on how you get on

X

[lacrimosaangel in reply to Cally01]

I will, thanks!!

[lacrimosaangel]

So, visit to the GP went as expected. running half an hour late, took the "throw everything and see what sticks" approach. Gave him all the info, including the notes from Mary and the info from the emergency OOH doctor.

He prescribed anti-biotics and ibuprofen. I have *another* 5 blood tests, none of which are for Hughe's or anything slightly related. Didn't get the CT that the OOH recommend at bare minimum either, so I still have more questions. (bloods are: ANA, Blood picture [inc. FBC/Diff] CRP, ESR, Random Glucose, Liver [ALT, T Bil, Alb, ALP], TSH, Serum U&E)

Apparently, you have to have blood leaking out of your ears before the doctors will take you seriously about headaches... *facepalm*

[MaryF in reply to lacrimosaangel]

That is awful, those three tests are cheap to do, visit the practice manager with the debate from the House of Lords I gave you and the three blood tests needed and explain you are going to make a formal complaint and go to your MP Visit with your most articulate friend, colleague, relative or neignbour, and explain should they not help you then if anything happens to you, having presented them with the obvious symptoms you will hold them directly responsible.. MaryF

[Fran_in_California]

Please get with a Neurologist or headache specialist as soon as you can. They often provide insight and alternatives that GPs aren't equipped to. Here in the US, we've had a recall of Sumatriptan for possible contamination. All luck to you.

[princess-chiobits]

I'm sorry to hear it didn't go well. GP's really aren't helpful about migraines. as others have stated- maybe see a specialist or a neurologist, maybe ask the gp for a referal (good luck though).

the injections seem to be the best option from reading notes, so maybe pursue this?

good luck and update is so we can try and help too

I'm currently fasting for Ramadan so can only eat from 9.30pm and then stop eating/drinking 2.30am. surprisingly my migraines aren't that bad and some days none existent. I only have a slight migraine from 2pm until I start eating now, and take ibruprofen and if needed after a sumatriptan. I'm keeping a food diary too so will see what my triggers are.

[Crissijack]

I have had migraines since I was 8, I am now approaching my 25th birthday. My migraines cause me to go numb on one side of my body, have slurred speech, tunnel vision, nausea, sickness, confusion and a blinding headache that lasts for days. I lost one job and had to quit another, I have been on every medication known to man and I am triggered by everything from partying to stress to sex to an all you can eat buffet. Unfortunately some of us are cursed with this and we just have to find something that can help relieve the pain. The only thing that I have tried and gives me some sort of relief is a medication called atenolol, I take two a night as a preventive and i don't have them as often, they haven't stopped but they are better. I hope that helps

[Val135]

For help with head pain, try a 'chill pillow' , made by JML. I bought one a few months ago and use it every night as a pillow. I suffer from hemiplegic migraines and have constant head pain especially at night but since using the chill pillow I now get some sleep! It is better than drugs and stays cold all night. The best £9.99 I've ever spent.