Rebound headache? Advice needed

[Star444]

Hi I really need advice it all started when I was ill with sinitus I was sleeping upright because I was so bunged up and now it's possible I have tension headache because of this, my symptoms do feel like tension headaches apart from the fact that I have ringing in my ears and I have two throbbing areas on my left temple, the headaches started daily but by day 3/4 became 24/7 I have no life due to the pain and pressure it's terrible, recently the gp told me to stop pain Meds as worried about rebound headache since then the ear ringing has got far worse I feel as through I'm constantly moving like rocking on a ship, I noticed that yesterday stuff I was looking at was moving, I have started 10 mg amitriptyline which for two nights really helped, last night not so much I could feel the pressure on my head getting worse and like sharp hot areas. The amertriptlyn did help with this but today I have woken up with bad pressure on left side and very loud ringing in ears, I can't sleep on back or left side as it makes it worse I also have throbbing in left side again. I'm really worried that this isn't just a rebound headache and is more like daily migraine? Has anyone had similar

[Cally01]

Star444, yeah i had all of that and was diagnosed with a daily chronic headache/ migraine condition. I have had every tablet known to man for migraines and 2 lots of migraine botox, nothing worked and no painkillers help. 10mg of amitriptylene help for the pain behind my eyes but just a little.. I went to see a jaw specialist because my jaw was achy and when i spoke for 10mins it felt weak and tired on one side, could even notice my face swelling, anyway i had an mri yesterday, just waiting on results, specialist thinks i have cartilage ware n tear which could cause all my symptoms have a look in google for tmj/ tmd disorder symptoms.the only thing that helps me is sumatriptan injections / tablets. The pain in my temples is unbearable and the pressure behind my eyes....well..horific 24/7. Magnesium vitamin helps me with that. Hope this helps. See a dentist specialist if this is familiar.x

[Star444 in reply to Cally01]

Hi thanks for the reply, makes me feel like I'm not loosing my mind! I guess I'm going to have to wait before going back to gp as they will just say it's rebound and to go home I'm pretty sure it's not rebound headache, I looked up tmj but I don't seem to fit the symptoms. Are your headaches 24/7 with no break? Things I'm looking up people seem to say I have them daily but the odd hour or two it's less. Mine are constantly bad and sometimes very bad

[Cally01 in reply to Star444]

Hi i wake with pain behind my eyes and it escalates to my temples and keeps building all day, constant throb behind eyes until it feels like a migraine. I have riging in my ears periodically throughout the day but 15mths ago when it started the ringing was constant. I would have my heartbeat in my ears when trying to sleep and when my eyes were closed it was like going through a tunnel on a train, light and dark but eye's shut. ( the only way i can explain it) I'm dizzy a lot but not constant, its waves of dizzyness that comes when my left temple swells ( 5/6 times a day). I think the problem we all have is that our symptoms are vast and complicated. We all react to different meds and some people manage to control them with the meds but unfortunately mine are not reacting to anything so i look at tgat and hope my jaw is the problem I'm running out of options.

[tom1984 in reply to Cally01]

Like you I've tried just about every kind of migraine med over the years and got nowhere. . . .Are you sure this isn't cluster headache? I've had the same symptoms for years, assumed it was just a different type of migraine than what I was used to, but upon seeing a migraine specialist turned out to be cluster headache. . .intense pain behind one eye, swelling etc - does it affect both eyes at the same time or just one?

Have a look at this: nhs.uk/conditions/cluster-h...

If this sounds familiar, let your doctor know. GPs don't often have extensive knowledge of these types of things as they are (relatively) rare, and it often goes misdiagnosed as migraine - the treatments for migraine don't work for CH. I got a bottle of oxygen for home use and it works wonders for CH. . . .now just need to find a cure for normal migraines and trigeminal neuralgia. . . .

if the electric shock type feelings across the one side of your face/scalp are also present, it may be worth looking at trigeminal neuralgia too. . .which is another thing that gets misdiagnosed as migraine/teeth/jaw related too often. . . . nhs.uk/conditions/trigemina...

Just ideas - I'm not a medical expert, just had so many un/misdiagnosed problems for so long and seen so many specialists, thought I would pipe up just incase as I'm doing a lot better now I know what my issues really are

[Cally01 in reply to tom1984]

Thanx Tom I'll have a look. Neurologist diagnosed hemecrania continua but i have so many symptoms i think they really don't know. The jaw specialist thinks it's cartridge damage/erosian on the left side.

I wake with pain behind both eye's and it travels to my temples, i can feel my temples and above mainly my left ear swelling and it's full on migraine pain. I wrap my head in ice but i can't do anything 😭 . I'll look at your link thank you 😀

[Cally01 in reply to tom1984]

Hi Tom..I've looked at your links, i could be having CH going by the symptoms but its been every day for 15mths so they ruled it out. The dizzyness, confusion and periodic memory loss i get is really frustrating . I'll see what MRI says and take it from there. The only thing that gives relief for me is sumatriptan injections. No pain killer helps at all. Desperately trying to get control and get back to work. Thank you.

[tom1984 in reply to Cally01]

Every day constantly or every day in 'episodes', like 30 minutes at a time, possibly multiple times a day? because if it's every day episodes rather than constant. . .could still be cluster headache.

I also get the memory loss, confusion and dizzyness - but I think that's more to do with my migraines than CH. . . sometimes I can't remember family names, or my own name it's so bad. . . . used to be worrying, but I know it comes back pretty quick. . .

I won't fill this thread with pages of me going on about my own experiences. . . .but regarding medication, nothing ever worked for me - beta blockers, sumatriptan, zolmatriptan, any 'normal' pain killers etc etc - until the migraine specialist suggested daily co-enzyme Q10, riboflavin and magnesium. . . after a month or so of taking them my migraines (and to some extent CH, but it's hard to tell) frequency and severity decreased dramatically. When I do feel a 'normal' migraine coming on, the only thing that stops it is - dispersible asprin in a can of coke, with a over the counter seasickness drug. It just works!. . . and oxygen for the cluster headaches. . . .

[Cally01 in reply to tom1984]

Hi Tom.. yip everyday all day. I live for bed time and just pray i don't get wiped out before i can get to bed. When my temples go hard i put a hairband round my head and pack it with ice, it helps a little with the eye pain. I removed all pain relief/ triptans for 3 months as i was told it was rebound. After 3mths i took paracetamol on the onset of the eye pain when i woke but it was like taking a smartie!! Nothing!! Just nothing!! Then got occipital nerve blocks again, nothing. Then 33 injections of botox over my head again nothing. The only thing that helped slightly was botox between my eyes. Ill give Q10 and the other one a go, been taking magnesium for months. It does help at bedtime 😀 i manage 4hrs sleep. Tried cefaly too 😭 .

[Margauxjean in reply to Cally01]

Dear Cally, I hope you get relief! Hoe long have you been incapacitated and what is your job? Those injections are so expensive. We just lost our medical insurance because our COBRA payment was lost in the mail. I don't know what I am going to do as I take one or two Amerge triptans daily as a preventative and sumatriptan injection if it gets out of control. Best wishes for healing help.

[Cally01 in reply to Margauxjean]

Hi Margauxjean, I have been off work for over a yr now . I'm so sorry your healthcare situation is making your condition harder to handle. I do feel I'm getting closer to managing my condition just by a process of illimination. I do appreciate our healthcare in the Uk though because i know it could be a lot worse. Keep fighting 👊👊 . You really need to reduce the triptans it will be making you worse . Should be no more than 2 a wk but i know that's scary cause it's feeling impossible right now but it really won't help in the long run. Take care x

[babs1234 in reply to Cally01]

Cally, is you daith piercing not helping now ? X

[Cally01 in reply to babs1234]

Hey Babs, yeah I'm sure their not so severe and not daily in the usual way. They found a problem with my jaw, just waiting on treatment i have major daily dizzyness and my jaw aches all day, travels up to my temples and feels like migraine pain but they've advised it's not a regular migraine they say my jaws causing it. Triptans help but no pain killer helps. It feels every bit a migraine i won't know if their right until they treat my jaw. Here's hoping!! I still get 3/4 days of regular migraine a month on top of this but it's not decking my like it used to. Used to spend 4 out of 7 days in bed but i can control these now. The dizzyness wooly head and confusion is daily but jaw specialist says my jaws doing that!! They'll be treating the jaw in 2wks so I'll defo know if their right. X

[babs1234 in reply to Cally01]

Good luck hon. Mine are certainly less severe but I've done so many different things, daith piercing, magnesium, fever frew, chi machine. I don't know which has helped or whether it's a combination of all. Been rubbing voltarol into my neck every night too but now having ulcer problems again. Read the instructions on voltarol and it says not use if you have had an ulcer...my doctor prescribed this cream knowing about my previous ulcer ?? X

[Cally01 in reply to babs1234]

What a nightmare! I can't see constant doc it's always a diff one and they don't understand what's happening . I read everything thoroughly before taking it now. Most of the meds they give you cause hedaches! Can't win 👊. I take magnesium calcium and vit D but I'm going to try B2, coq10 with magnesium and see what that does. Good luck. Let me know how you get on x

[tom1984]

How long have you had this for now? Has inner ear infection or trauma been ruled out?

I had these exact symptoms (the feeling of rocking on a boat and ringing in ears - more than migraine related ringing and unsteadiness) a few times and it's turned out to be ear infection/inner ear issues (caused by diving in my case, but can be due to many things - especially if you've had sinusitis).

. . .I know how easy it is be tricked into thinking migraine when you suffer with them already, and if you've seen the doctor lots for migraine related issues they can be distracted too. . . .but this *could* be something easily fixable. . .worth checking just incase.

[Whynoexercise]

With ringing in your ear and loss of balance you should see your GP again to rule out other causes

[Whynoexercise]

Mmm like ... Acoustic neuroma ... Rare cause of these type of symptoms ..

[babs1234]

Symptoms sound similar to sinusitis, maybe a course of antibiotics might be worth a try. Just a thought

[Pattipan]

Labyrinthitis?  Menieres Disease?  I'm surprised these haven't been investigated and ruled out for you.  I had BPPV (Benign Paroxysmal Postural Vertigo on three occasions (cured by Epley Manouevre - Google it or look at videos on YouTube) but don't remember having that in conjunction with the migraines I was also having at the time (14 years ago)

Good luck!  Patti