I’m sorry to bother you all but feeling a bit lost 😞 .
The ongoing saga of the waking headache continues as it approaches its 4 year birthday 🤦♀️. I Saw a trainee Gp last week who was kind and lovely . She referred me to neurology which I’ve since discovered is a 10 month wait
The headaches are still only happening in the early hours of morning and do disappear once I get up after 20 mins of walking around but they are more intense now and pain is off the chart .
my question is .. do I see a private neurologist or wait to see my rheumatologist again ?
I haven’t got a date for follow up but I don’t want to muddy the waters and introduce another specialist into the mix .
ENT confirmed no sinus issues and said he is very confident sinuses aren’t causing the headache . He said this is likely to be a tension headache . Tried caffeine before bed , elevating pillows , nasal spray , pain killers .. nothing stops them happening .
Recent bloods myositis antibodies were OJ positive and Pm scl75 (same as 2020) .
I can’t thank you all enough for reading . Big hugs to all xxx 😘
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Tiggywoos
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I don't think it does make sense. A daily headache for four years must be miserable and must impact on your well-being. I think any good GP wouldn't want to experience that so why should you have to put up with it? Even if they can't cure it, knowing the cause may help you to manage it.
I was wondering if it was postural as you wake up with it after being supine in bed. That's why I was wondering about an LP. After four years I would push for a referral to a specialist or go private, if it were me. Good luck.
I have no advice to give other than I am so sorry that you are still having the headaches. If it were me I would go for a private consultation just to get their perspective on the situation. You might wait for the Rheumatology appointment only to find you will still need to wait for the NHS neurologist who will probably be the person you see privately anyway. Whatever you decide I hope you get the help you need xxx
thank you angel that’s so kind of you to reply . I don’t suppose there is anything to lose . The rheumatologist like you say may want me to see neurologist so I would have to wait anyway . I really hoping you’re managing as well as you can 😘xxx
Thank you I am struggling badly with pelvic pain and like you I have been told minimum two years wait. It is affecting my sleep badly. The week before last I managed about eight hours all week. I look like a zombie that has had too much to drink most of the time. Such is life eh?
Let us know what you decide and 🙏🏻 that you will start to recover xxx
oh my goodness don’t say about the zombie 🧟♀️ thing … we got followed round Asda the other day by security and I’m sure it’s because like you I have the zombie who’s up to no good look 🤦♀️.
I’m so sorry about your pelvic pain as deep pain like that is so hard .. it’s not like being able to rub a painful joint or apply anything to it . Sleep deprivation is like torture 😞. I pray that you get some relief too soon hun xxx 😘
I have had headaches, particularly on rising, the last three years.
Vasculitis?
2022 - referred twice to vasculitis for expected GCA.
Second time on prednisolone.
Discharged - no evidence of GCA found, but I found prednisolone worked a treat. Headache went.
Sinuses?
GP then referred to ENT following advice from rheumy.
3 months of waiting for an ENT appointment then referral rejected.
(ENT said it should go to Neurology.)
Neurology?
Neurology referral then made by GP, but Neurology made it a 'Headache clinic referral'
This turned out to be an appointment on phone with GP with a special interest in headaches, who was working alongside consultant I believe.
Headache clinic?
Told by 'GP with Special Interest' I had post-traumatic migraine.
Had migraine as a child and other instances two years ago
Did not relate to this headache being migraine at all.
I was hoping Neurology could look at other issues - numbness in legs, difficulty voiding, autonomic dysfunction...but dream on..
pathways are narrow, otherwise it is too difficult for the NHS..
I was hoping that the MRI of my orbits, requested recently by the eye hospital, would extend to cover just above and around my right temple but although I mentioned rubbish headaches continually and was confident doctors had heard...only limited MRI of orbits was done ...otherwise too costly time-consuming for the Radiologist I guess.
I had a rubbish reaction to Gadolinium and sent feedback to PALS that got forwarded to Complaints..I asked why it did not extend to brain and they said because needed to focus on orbits...
Sorry I'm so cynical but my head was bumped in 2015, since autoimmune symptoms kicked in in 2019, I have been plagued by headaches.
So why was the referral as it was..you might be interested in the scope used..
On reading I found the criteria used are very very narrow, and MRI scans discouraged...and a 'definitive (they say positive?) diagnosis' encouraged, so no further investigations required.
If it is not vasculitis, I actually think I might have an aneurism..hoping not though..
So my thoughts are - look at when it happens and do what I can myself - until one day a pathway exists that might help me, or I end up in A&E
- I try not to get dehydrated.
- I try to make sure I never get hungry / short of sugar.
-I 'run away from stress', as that usually starts the headache, and rest / relax as much as I can. Lots of fresh air, trees, soak in the bath, nice music etc
- Before steroids I could not put one side of my head on the pillow, after steroid I find moving my head on the pillow helps - I think it may be affecting my scalp / blood vessels in it, although pain feels in my head.
-I have added headache entries to my daily chart. I have drawn a headache diagram showing where the headache is so I can use the right anatomical words / describe headache positions on the phone...as this was the only sort of appointment offered to me.
- I actually think I have more than one sort of headache but not sure pathway above considers this, only closest fit answer based on simple grid with three options:
I’m so sorry you’ve got no where with your headaches . It all sounds horribly familiar . Thank you for sharing and for the advice . I will start a headache chart .
I was suffering, and do still suffer (although less frequently) with severe headaches that the first two neurologists wanted to put down as migraine. But the MRI brain showed white matter intensities in the sub cortex (I think -fatigue hitting brain bad today). Despite this, my brain MRI had been reported as normal- I just happened to spot the intensities as the neurologist was flicking through the images on her computer to "reassure" me all was ok. She said 'oh, you've been looking that up on Google as well' and claimed they were normal these were "age related" intensities - I was 52 at the time.
I pointed out that I recognised these nit because been looking up things on Google, but as the brain MRI I'd had aged around 40 also showed them, and she agreed they would not be age related at that early age. I insisted she call for the previous scan and compare the two to see if I'd developed more - I had.
She then referred me to another neurologist colleague with expertise in Bechets . I don't have Bechets but do have a small vessel vasculitis (anti C1q positive urticarial vasculitis syndrome).
He said such hyperintensities can be caused by small blood vessels leaking fluid when inflamed and can be seen in lupus and vasculitis.
He's now retired - best person I've ever seen about my care and the only decent neurologist I've encountered so far. They all seem to want to fobb you off with migraine before they have investigated further.
Keep fighting for that brain MRI and then get a copy of it, the actual images and not just the report. You know your own body and I believe over diagnosing migraine suits everyone in the NHS at the moment bar the patients.
Thanks Hoofprints 🐴, this is the best advice I have had on neurology stuff. It is amazing what we learn here. Far more than from specialists, a lot of the time.
It is also amazing how things that come up are so often ignored or given age-related status, if we are older than the doctor reviewing them.
I loved hearing how you corrected the assumption about 'Google use' (not that it is wrong, sure it has kept a lot of us alive) and insisted on them comparing the hyperintensity to the earlier scan 💪💜🙂
Now the question is, where are there neurologists that can be trusted.
That's the problem - finding the knowledgeable, experienced doctors who are minded to take a broad view of the symptoms and not just the blood tests, and piece it all together.I think so much pressure to preserve their budgets exists and this further impedes even the best who might know which treatment and tests are needed, but are having to fight to secure the funding for their patients to have it. No wonder so many good doctors become frustrated and drop out or retire early because of the frustration and the constraints of the politics.
I'm now without a neurologist and am still waiting for his replacement to 'review ' my case to see if I need help supposedly. Not good enough to still be in this position a year on from my last appointment, especially where a rare disease is concerned.
If you could get yourself seen at a specialist vasculitis centre, like Addenbrookes or Hammersmith, chances are you will find a good neurologist their. Don't give up 🙏
I was told to have white matter on the MRI and was told it was normal at that time I was in my 40's. He was actually looking at the MRI and the repost at the same time just to confirm I have never had any other MRI before at that hospital only another one I had was in my 20's the 1st migraine set I had after chicken pox attack post incubation of 14days. Then it cleared up after child child 1 then turned up again after child 2 but this time was certainly very different from the 1st one. I would have it once a day then twice a day it gradually became more and more frequent until it was continuous through the day.everyday. non stop.
I'm really sorry you are suffering from this too. One of the things I was also supposed to have done was a lumbar puncture at the time of a really severe headache to check whether any of the herpes viruses were implicated. I had viral meningitis and the they never tested my CSF sample back then to see what virus caused it. I now wonder if I did in fact have a form of meningitis caused by autoimmunity rather than infection.
This lumbar puncture never happened despite my several attempts (another long story) but it's interesting that you have had chickenpox (herpes zoster virus) in your picture too.
I think the traditional thinking on the white matter hyperintensities is that they are normal as far asost neurologists are concerned, and can be associated with migraine. It was only this last neurologist of the four neurologists I've seen who thought them significant in a picture of vasculitis/lupus type illness.
I'd be interested to know what if any new research is going on with this.
Talking about white matter inwas going through my old notes ,my old neuro did do full blood work out once he saw the 'white blob' as he called 😅😆. One of the test was ANA they did come back neg at that time 3 years later I was positive and was diagnosed SLE I was still seeing him at that time and he knew of my diagnosis then.
I copied a diagram in a book. The whole sheet of paper ended up being covered in notes.
I think headaches are one of my worst symptoms. I think they are due to inflammation as they match the time other symptoms happen, are cured by steroid and improved on increased antimalarial.
Hope you find an answer and a solution soon..that headache goes🙏
I agree it is my worst symptom too as it doesn’t come and go like other symptoms . It is literally like I’ve had no sleep and someone has been sat on my head and tied a band around it . I agree about inflammation as heads were a bit better when on steroid couple months ago for episcleritis .
Hope you find answer too and I will let you know if i do 🙏
Any sort of tension / major worry or sun exposure during the day starts it off
Then it lingers for weeks and months, steroid worked, 300 mg Aspirin helps but then stomach is hit..
I have felt my headache coming back the last 3 or 4 days.
Worst first thing, not a nice way to start the day. First thing in my journal which takes form of a weekly chart with a time bar for each day - so see time-related things.
started my pain diary today included time it started (early one today 3.30am ) . Also going to draw that big pic of head . Feel bit better for doing something constructive so thank you 🙏 xx
Really hope mepacrin works for you .. I have heard good things about it on forum
Found I felt bit more in control of the situation, can report on patterns etc.
I bought a big ring binder today for my weekly log sheets, which form my health journal. 📚✍️😊
I try and always email things like drawings, ahead of appointments (check their receipt) and also take extra paper copy to any face-to-face.
With the Headache clinic my notes ended up being most of the clinic letter🙂, so the only mistake was where they had said 'post traumatic migraine' at the end🤔.
I'm hoping over time the truth then end ups in our hospital record, (to counter the historic inaccuracies the hospitals have put in)🙂 Then records hopefully improve a bit.. 🤞🙏🙂
There is a migraine chart that that you can download and print out . It has a full months on a sheets all you need is fill in the month and year on the top . You can elaborate how strong /painful it is and how long it lasted each time . Also you can write what you did if it is a bright or dull day , what you think triggered it? So when you see a consultant they can see you have done a chart and can see that you are having migraines continuously xtimes of weeks or months. He will also take a photo copy of the chart .
Refer to possible cause? Mine only happen in early hours, these days after my neck has fallen off the pillow affecting the angle of my sleeping position. Used to be long car journeys but I can’t manage these now: spine-health.com/conditions....
High blood pressure could cause headaches. I would check blood pressure in the morning ànd before bed and evening to zee if there are sudden changes? I hope you recover soon xx
So kind of you to think of me 🙏. The BP is pretty much same sat down or laid down and averages 90/56. Stood up little higher 100/65so not much difference . Appointment week Thursday . How are you doing ?
Hi, if you can afford it I'd go private for the first consultation. It's not how it should be is it but sometimes you just have to do what you have to do to get yourself better. When I'm ill my lymph nodes swell, only recently found out there are lymph nodes at the back/ base of head. I just thought headache and scalp pain ,when I can't put my head on the pillow because even the slightest touch is very painful.
If you can afford it go private. You need to rule in or out brain involvement. I've had a brain haemorrhage and a few years after I was getting terrible headaches again. I paid about £1000 for a couple of consultant visits and an mri. It was worth every penny to know I didn't have any more aneurysms. I just didn't want the NHS wait. Turned out it was blood pressure issues, high and low. I had my blood pressure medication doubled and the headaches got a lot less frequent. I also take gabapentin at night and that dulls down all pain so I get good sleep most of the night now. I hope you find the cause and a cure soon.
blimey that must of been so frightening for you 😞. I’ve made an appointment for next month thanks to you all on here . We get so worn down by drs saying “you’re ok “ don’t we when we’re not . I’m going to keep diary including bp to take to appointment . I’m so glad you now get some relief and thank you for your kind reply x
well done, good luck and let us know how you get on, hopefully now you know something is happening it will be slightly tolerable. Rest, relax and revive until then x
Brilliant you need to know whats going on and get piece of mind. Hopefully you'll get an MRI as if you have brain issues they need to be addressed if not you can breathe easier and think about the next route. Don't forget when you have the headache in the night take your bp straight away. I'm surprised the GP hasn't put you on a 24 monitor as its so helpful in measuring a whole days bp and through the night. Honestly there doesn't seem to be anywhere that lupus doesn't affect including the brain. For me its attacking my down below regoin every couple of months and I've just found out that is a lupus effect. Took research to find that its a known thing as GPs have no clue and getting through to my Rheumy takes time too. You just think where next will it strike? Good luck with your appointment and hopefully the Neurologist at least knows a bit about Lupus and its effects. 👍💜
dg70 I’m so sorry you’ve got visitors downstairs I’ve had them too 🤦♀️. Rheumatologist said If they visit again I can have colchine ? Great advice about taking bp as soon as it comes on . I def get where you’re coming from as in where will it strike next 😖. Got my eyes last month. Thanks so much for taking time to reply and might be worth you looking up colchine if I’ve spelt it right xx
That's gout medication, but if it works then great. I am awaiting a dermatology referral to a vulva clinic which could come anytime in the next year knowing the nhs but as its a specialist clinic, ill wait. I never knew I could itch and burn so much everywhere down there just like a face rash does. I'm so glad I'm with a lupus centre of excellence now as they can refer me to any linked clinic easily within the hospital. Takes the pressure of me finding where to go next as GPs are clueless sometimes, keep throwing antibiotic at me but now I'm increasingly allergic to any antibiotic my options are getting more limited. We have so much to deal with sometimes with Lupus it's so unpredictable as I'm sure you know only too well. Thanks for answering and good luck.
Hi Tiggywoos, so sorry to hear about your pain. I don’t know if this helps but I’ve had pounding headaches from TMJ issues, which radiate down my neck into my shoulders, all of which contribute to headaches. Targeted massage plus wearing a splint at night has somewhat reduced these headaches.
Also, I’ve had migraines that have shifted and changed type over the years, migrainous vertigo (no headache) which then later morphed into headache-only migraines years later.
As I say, not sure if this helps or not, hope you find a light at the end of this headachey tunnel soon!
Are you taking any supplements? Do you notice it appearing or being made stronger by any food or drink? It sounds cliché but it's the best we can do.
I would advise relaxation, avoid UV lights, eat as healthy and organic as you can, take walks, acupuncture, meditate, aromatherapy, relaxing music or yoga if you can. And take supplements especially magnesium and vitamin B. Riboflavin was advised to me by my neurologist years ago. Since taking the supplements I feel much better and there is research about that too specially with magnesium. If we were tested most of us would have a deficiency of it. The reality is that we don't get enough nutrients and food has less and more chemicals.
I think it's worth a try while you are waiting. My consultants know that I am taking a lot of supplements and they also prescribed folic acid for my hair loss.
As a shot in the dark…..have you had any Physiotherapy on your neck? I have a lot of neck problems & physio has really helped relieving headaches..…especially with professionally advised sleep position aids.
When you think about it…if the headache goes away when you change position & doesn’t return until the next night without you having any related symptoms during the day- apart from exhaustion from lack of sleep, with no pins & needles or any other physical signs ….. it might be worth self referring to your local NHS Hospital Physiotherapy department for some advice, whilst you wait for the neuro referral.
You can find the self referral form on line….under something like NHS Physiotherapy self referral.
I do hope you find something to help you very soon.
fab advice thank you . I am under the care of physio for frozen shoulder and tendinitis so I’ll ask him next week about my neck . Thanks so much and glad the physio and aids helped you x
Hi Tiggywoos,I presume you are on Hydroxchoriquine?
My history is I started with migraines on one side . Is yours one sided ? And how long do they last ? And does it effect any part of your body ie weakness like arms legs face lips ? Any numbness to the face during those "headaches" any intense light sensitivity during those headaches as well. ?
I was classified as a no good headache for having headaches with without any reason!! But I do know that the moment I started Hydroxchoriquine my headaches ceased totally.
I was put on Topiramate to control the migraines I am still on them they are very good drug they have controlled my migraines.
From unable to get up from bed sleeping all day due to the pain in the head and light sensitivity combination of them both I was getting them both continuously non stop headaches.
Suggestions is to wear dark glasses indoors as well as outdoors make sure you have very dark dark glasses. Make sure your curtains are closed all the time to block out light as much as possible. This is important whilst you have these headaches to aid your recovery and post recovery of it. You will also find you will have stiffness of neck and back and shoulders due to this headaches. This is due to the muscles spasms. Try and get some one to message that area to soften the area after each attack to relieve the tension. Also you will find your head the veins in your head will hurt. During the attack and post attack there is nothing much can be done that is the vessel dilating and constriction each time causing pain.
I have been there I know these .sorry you are going through it. I do hope you get to see a neuro asap and they can do a necessary test to check you out. I when through loads of test with the neuro team this was all pre diagnose of SLE they even tested me for ANA and it came back neg at that time it was 3years later that it showed up positive to SLE by them I could barely walk lost all my strength.
Hey Tiggywoos. Pain is literally a pain. I’ve had RA for 30 yrs. (since i was 21). A couple of yrs ago i had the most awful headache that lasted a whole week. Went to my GP. He sent me to a&e straight away. Shook my hand & wished me luck. (Made me even more nervous). He was worried it was arteritis. When one of the arteries are blocked in the brain. (I think). After the usual hrs of waiting. Lovely staff n the usual millions of tests. They thought it WAS my sinuses. So the opposite to you. It was such a bloody relief when they let me go home! I hate staying in. I miss my own bed! Good luck with everything. Hope it’s not serious. X
This happened a couple of yrs ago! I wrote to say i know how you feel. It’s so frustrating & scary. I had a really bad flare up of my RA last August. I could hardly walk. I was in tears in a&e. A lovely nurse sent me straight through. I was so relieved. I still had to wait 7.5 hrs! But at least i had a cubicle. I had an awful flare up of bursitis in my left shoulder & excrutiating back pain. They gave me morphin & other tabs. Then told me i’ve got a couple of kidney stones!! The consultant said he’d refer me to a specialist. That was last August. I still haven’t heard anything!! I’ve started getting the same pain again now. So i’m a bit worried it could be starting again. But good luck with everything. Hopefully you’ll be seen soon. You’ve really got to speak up for yourself. Show them how these awful headaches are affecting your life. Good luck Tiggy. X
In my experience, having both Lupus and migraine disease, I would say definitely see a neurologist as well as your rheumatologist. Rheumatologists rarely know enough about migraine disease to be able to help you, but they can work together to find compatible meds. I gave up for a long time and now have lesions on my brain, so best to seek advice as soon as you can.
thank you so much for taking time to reply . Ive booked an appointment with a neurologist after all the fantastic support and encouragement I’ve had on here . I am so sorry you have lesions on your brain . I think we give up mentioning symptoms sometimes for fear of lack of interest or compassion . Take care x
I agree, appointments are brief and compassion is minimal, but you have to remember to put yourself first. Wish you all the best for your upcoming appointment. Hope things improve xxx
i had persistant daily migraines for months and months a couple of years ago
had mri of brain was clear - referred to ENT
sinuses were clear on CT and MRI (id had repeated sinus infections also) and ENT said it was migraine. he suggested magnesium and B2 as a preventative
So - i left knowing nothing sinister was causing the migraines - and once the relief left i realised i was still in pain.
So back to my GP. what he said was very informative - i was talking about the magnesium and B2 and wondering what my triggers were - he said - when you are in an actute phase EVERYTHING is a trigger. so the key is to get out of the acute phase and then you can press reset and take the preventatives etc - they won't work when you're already in a headache cycle.. i guess it's like being in a lupus flare you need to get out of it.
so i knew it was inflammation (i didn't know i had lupus at the time) so what i did to get out of the acute phase?
1) found a physio that i knew had a special interest in headaches
it was definitely TMJ related - and a few sessions with her made a BIG difference
2) acupuncture
i don't know if it helped but it didn't hurt and it was 30 mins to myself to relax
3) anti-inflammatory diet
as hard as it was - i cut out EVERYTHING processed - literally just ate fresh fruit, veg and meat - aftter 2 weeks - the headaches were gone!
so not sure which of the 3 it was - but none are medication and none will hurt to try - i think the food may have been the biggest factor - now i eat a regular diet with caffeine and dairy and sugar - i was able to reintroduce after the inflammation had died down.
good luck
it's debilitating - i have 4 kids - and i work - and i kept going for months - looking back i don't know how....but we are strong.
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Migraine aura and Lupus?
Just need to tell someone.SORRY FOR THE LONG POST
