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 . CT sinuses negative .
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 😘
Written by
Tiggywoos
To view profiles and participate in discussions please or .
Hello Tiggywoos. Sorry you have persistent waking headaches. I get these too - only periodically now though because I know the cause of mine and how to try and avoid these or treat. In my case they are called cervicogenic headaches and present like migraine but are coming up the way from my neck rather than being tension headaches.
My rheumatologist and neurologist diagnosed and treat these based on imaging of my brain and neck. Really good neck support while lying and sitting for long periods is key. I use a tempura pillow which I shape to make my head so that my spine is aligned as possible. My neurologist said things like getting hair washed with head back at hairdresser is a complete no no for me. I’m also very hypermobile with systemic sclerosis and Sjögren’s. And I have severe cervical disc disease confirmed by MRI affecting my C5/6 and C6/7 plus thoracic scoliosis and bulging L5/S1.
If this same sort of issue causing muscle spasms and referred headaches, seems a good fit for yours then you should ask to see a neurologist and request MRI of brain and neck. It’s actually quite a common cause of migraine-like headache relating to wear and tear in spine. My GP diagnosed this first. Diazepam 5mg and paracetamol both help me to get on top of mine. spine-health.com/conditions....
thanks so much oldted . I always follow you with great interest .I’ve booked appointment for next month and I’ll update if anything interesting to report xx
I really hope you get to bottom of this - at least cervicogenic headaches are fairly manageable by keeping your neck well supported and spine aligned correctly. I notice on link it stated RA as a potential cause of these kind of headaches so definitely an avenue worth strongly considering I’d have thought.
When mine were at their most daily cripppling some years ago (2018 I think) I and my neurologist also considered cerebral spinal fluid leaks. I still sometimes wonder now if this was the issue because I know I’m so hypermobile and have scoliosis - both of which can be associated with this. But to be honest they did stop after a long summer of torturing me relentlessly Eli’s I sat or stood up for long and my neurologist decided that the severe degenerative disc disease was much more likely culprit. X
Hi Tighywoos, not sure if this will help or if possibly tried, but prior to being diagnosed or even hearing the word systemic sclerosis i suffered with severe headaches for years, my GP at the time tried everything including Tramadol, however I saw a different doctor who took me off Tramadol as they werent helping and put me on Propanonal , unbelievably this really helped me and I finally started to get some reprieve. I hope this helps and you get some relief soon. Best wishes x
I know tension headache diagnosis is frustrating. I’ve had the same. Back in 2015 I had constant 24/7 headaches that got so bad I was admitted to hospital with a suspected brain bleed. CT and MRI later and nothing showed, sent home and told its tension headaches!
I refused to believe this and worried myself sick that something more was going on. It went on for two years before they finally petered out.
I’m the end I think it was chiropractor and acupuncture that finally sorted it.
Tension headaches can be extremely severe and the name dumbs down how bad and constant they can be.
Diagnosing headaches and stopping them is difficult. I was prescribed citralopam for nerve pain. This did nothing and gave me worse side effects so I refused further medication and went the holistic route.
I’d certainly keep the appointment with neurologist- for peace of mind, and if you can afford to go private then do so as stress will just exacerbate the problem if it is tension headaches.
I have suffered with ‘aura migraine’ for years. The headache actually wasn’t the problem but the aura can be horrendous, hallucinatory with total or part loss of vision, nausea and can knock me out for several days in recovery. In 2018/19 I started with really bad pain on one side of my head, despite telling my GP it was ignored, it got to the stage where I was reduced to banging my head with my fists or against a wall to distract from the pain. By Christmas 2019 I could stand it no longer, luckily I saw a locum GP who immediately referred me to the Walton Centre in Liverpool, a specialist neurological centre. I had an MRI which ruled out growths etc and based on my symptoms a diagnosis of Cluster attack headache was given.
Keeping a diary revealed that the attacks were coming repeatedly throughout the day at roughly the same times, I could almost set a watch by them. The headaches are always only one sided, unlike migraine, and are akin to having an ice pick stabbed repeatedly into your head. If you google headaches (responsible sites such as the NHS) you will find there are many differing forms of headache each with very specific symptoms. I’m not saying your headache is Cluster but when it is chronic it invariably wakes me in the mornings. Initially my attacks were chronic daily but have now become less frequent, thankfully. I cannot take medication because of heart problems but use high flow oxygen for really bad attacks which in most cases works to relieve the pain.
You do need to see a Neurologist, preferably one who specialises in headaches. I saw a Dr Krishna from the Walton Centre, Liverpool and she was excellent, very kind and easy to talk to, she diagnosed me immediately. Wherever you live, if you can afford it, I would try to see a Neurologist privately, you probably have enough suffering to put with Rheumatologically, don’t suffer in silence with your headaches whatever the cause any longer, as I know the pain can be devastating and debilitating. Hope this is of some help, good luck.
Just one last thing concerning migraines and please not said to cause alarm, just information. A rare cause of migraines can be an undetected PFO (congenital hole between the Atrium in your heart). Mine unbelievably was not detected until I was 60 despite having suffered a heart attack at the age of 47, this was then thought to be a very rare cause of the heart attack (so don’t be alarmed). It certainly made sense of exhaustion and other symptoms since childhood.
Roughly 25% of the population are believed to have a PFO but usually so insignificant that it never causes any problems. Interestingly, well to me 🫤 anyway ha ha, I had to have an operation to insert a permanent device which closes the PFO., and the migraines stopped. The last two years my aura migraines have returned and along with other heart symptoms I suspect the device is leaking, allowing unfiltered (clots) and blood to circulate the wrong way through my heart again. However as with many things in the NHS trying to get someone to believe me and do a simple Bubble Echocardiogram to check it out is impossible, so I am thinking of seeing a Neurologist or Cardiologist privately to get this checked, but shouldn’t have to go privately.
Hopefully and almost certainly this isn’t your problem but it is something that is rarely mentioned with migraines but I feel strongly it should be something that is ruled out, however rare the incidents. I wished I had known sooner and reading that one of the Osmond Group brothers suffered a similar thing and seeing a private cardiologist helped to alert me. Best wishes.
I am awaiting results of an MRI scan on my head and neck. I asked the neurologist to help me disentangle what might be causing my chronic headaches and muscle pain in neck and shoulder. I also get aching on the right side of my face which also feels very cold.
I have had chronic migraine for years . It comes in the early hours of the morning and will not go until I take sumatriptan. Unfortunately you are not supposed to take this drug more than 10 days a month!
I also suffer from limited systemic sclerosis (mildly thank goodness), fibromyalgia, sjogrens and lichen sclerosis. I have tried all the anti-depressants and anti-convulsants NHS prescribes and they just make me feel dreadful. Also tried chiropractic, acupuncture, physio, and cranial sacro therapy. All very expensive and, for me. useless.
So I am interested to discover whether my symptoms are migraine, fibromyalgia, or trigeminal neuralgia, or a cocktail of all three. The neurologist said I may be a candidate for Botox in the back of my skull but first we need the results of the MRI.
We are all unique in our symptoms and our response to various treatments. I wish you well Tiggywoos.
Other thing I forgot to mention is that I’m 60 and my CSF or CGH headaches only started about 6 years ago. GPs tried to diagnose and treat as migraine but my neurologist was adamant that, unless we have history of migraine as young person then it’s almost impossible to start getting them at an older age. No idea where you sit in this regard but if older and no history then migraines would be most unlikely.
Although I do very occasionally now suffer what my eye dr and neurologist both confirm as occular migraine with sudden spikes and drops in my BP and flashing white patterns in top of one eye with temporary blindness. Not of same true migraine family as aura migraine though and very distinctive visually.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Any advice on my shrinking mouth 
Advice please!
Type of scleroderma?
Desperate
