Headaches

[Bachetsrabbithole]

Headaches coming up strong every few days!!! Nothing is bringing them down to a manageable pain level. Not wanting to go in to the MD for them. I have 3 appointments this coming week and just want this wave to resolve. Has anyone found a product that works better for you than another? That doesn’t cause more harm to esophagus ulcers. Thank you

[Budapest]

It is advisable to inform your Vasculitis team about the recurrent headaches. They can then decide whether to make referrals (? to Neurology) to establish whether the headaches are coming from a Vasculitis base or are migraines.

Amitriptyline is often prescribed & can be very effective.

Also think about keeping a simple headache chart showing which days the headaches occour, what time of day/night, severity, possible triggers, etc. It will show a pattern over time & be very useful when you see your specialist or GP. It helps you to present the information in a helpful, visual way

[Bachetsrabbithole in reply to Budapest]

I will be seeing my rheumatologist on Wednesday, I’ve been keeping a tab on my phones calendar for reference. Thank you

[Zuzu798]

Hi there, the only thing that helps me over the 3 - 4 day period when I have a massive headache is Stopayne (stillpayne) and it is also not as bad on the Kidney's as other painkiller's I was told by the specialist. I have a different type of headache that comes that is more like encephalitis migraine and for that I have Maxalt RPD 10 (Rizatriptan 10mg) Hope that helps

[Bachetsrabbithole in reply to Zuzu798]

Thank you

[Zuzu798 in reply to Bachetsrabbithole]

My pleasure

[Blearyeyed]

If you have three appointments this week , they could be increasing your stress and causing tension migraine .

Whatever the cause , before even beginning the true cause of your appointment the first thing you should do is mention the headaches, especially if they don't respond to your current medication or over the counter pain killers.

Headaches of that nature can be a symptom of serious things , not just Behcets related.

Behcets is vascular in nature , and bad migraine headaches can also be symptom of a new autoinflammatory response . Behcets can affect the eyes , headaches can also be a sign of vision related issues to come , it is vital to tell a doctor if you have headaches that persist in case it is related to your eyes .

They will be able to prescribe for it , or increasing your dose of your present medication may solve the issue.

It is particularly important if you are already on steroids or neuro drugs prescribed for pain like Amitriptyline or Lycira already as it may be a side effect , or they may need to change the dose. Persistent headaches are often a symptom that is trying to tell you something , like needing to amend your current medication or dose.

If you have any stabbing in the temples , whooshing or tinnitus in the ears and any problems get worse with vision related work , let them know too , but definitely report it at your nearest appointment.

Good luck, let us know how you get on

[Bachetsrabbithole in reply to Blearyeyed]

Thank you

[Hidden in reply to Blearyeyed]

Your advice is great. Have really bad migraines for the last few months know one will list painkillers won’t work and have all the above symptoms. Prednisone up which does help not the best solution!!

[Blearyeyed in reply to Hidden]

Is the Prednisone helping with your headaches and are you on any other meds regularly for your headaches?

Do you find it eases if not stops with either heat or cold?

I have some techniques I use for self help , but knowing which temperature or movements make them worse or better would mean I could give you some tips that are more suited to you. Let me know , happy to help x

[Hidden in reply to Blearyeyed]

Yeh it helped so much!! I am on certain seizure medication that is why I can only have painadine forte. Have tried cold/hot packs and heaps of panadole which doesn’t work that well. Thanks for listening.🌸

[Lovingdragonflies]

I’ve recently been prescribed a gammacore, it’s a Vegas nerve stimulator. It along with azathioprine has been a game changer for me. I’ve stopped triptans because I think they were worsening my symptoms. This is really pretty amazing for me.

[Stm252]

Increasing my topirimate (for migraines) helps quite a bit. I also place a heat pack on the base of my neck and do shoulder rolls when it is stress related to just keep myself moving. Weekly accupuncture sometimes may help but I don't think by much. Honestly the topirimate does the trick for me. And when I don't sleep enough my migraines are unmanageable.

[Bachetsrabbithole]

I just wanted to thank everyone for replying! I didn’t have a headache yesterday!!! Went outside for a little while to relax in nature and it helped. Probably stress related. I do plan on informing the MD’s about it. I think I’m scared being off the prednisone also. Last time left me with a blind spot in my vision! It’s really scary. I appreciate all your support. I’ll touch base after my appointments. Hope all stays well & everyone here has a great week!

[SCMW]

Hi, I was referred to neurology about the same time as I started my journey with rheumatology which resulted in the Behcets diagnosis. I struggled for around 15 years with horrendous migraines. I would say have a good read of the NICE guidelines for migraine & also the BASH headache guidelines. I had head & neck MRIs all fine, took sumatriptan & was also on nortriptyline and colchicine. I was being lined up for a GON block when I was asked by my GP to try a first line preventative, beta blockers. I wasn’t keen, but have had a trial for about a month now of bisoprolol & it’s turned down the pain of the migraines significantly including the frequency. For the first time in literally years, I have a clear head. I hope you find some relief soon. Best wishes,

[Bachetsrabbithole in reply to SCMW]

Thank you for the great advice, I actually do not have a neurologist at this point since I have not had abnormal mri’s like you said. I’m being told the headaches are from uveitis, it makes difficult to control. I have 1.5 MD’s that actually make any sense when it comes to this disease. I thank god for them most of the time. I’ve had md’s googling information in front of me! That’s how you know it’s not going to be a productive visit.

[SCMW]

Hi, that’s ok. Very interesting your comment on the headaches being linked to uveitis. I don’t seem to have any eye activity at the moment but have had odd eye issues over the years, raised pressures, wiry vessels, blepharitis as examples. It does make you wonder. I also had sinus tachycardia diagnosed recently so the beta blockers helped with my high heart rate. The other guidelines worth a look generally are the eular guidelines for Behcets, if you haven’t seen them, also useful, as you say not everyone is familiar with it! Best wishes,