Nerve Blocking for Headaches

[KatrinaJones]

Hi

Has anyone had nerve blocking done for headaches. They have also recommended botox. We are trying to find out about this treatment Louise has had a sagittal sinus thrombosis, APS and is currently taking warfarin. Please help?

[MaryF Administrator]

Hi, where are you located, it is totally crucial that you have a specialist who is fully up to date with Hughes Syndrome/APS. Please let me/us know so we can try and help with more detail. MaryF

[Lure2]

It is about your daughter I suppose who has got a diagnose of APS.

Watch out now. Neurologists are indeed not the best doctors for this illness,

She needs an APS-Specialist. That is exstremely important.

Best wishes from Kerstin in Stockholm

[Louise_Davies]

Hi all, my mum has posted this on behalf of myself.

I saw a consultant at Guys clinic in June, who recommended these injections, and referred me on for this.

Today I saw a Dr Turtle at Werndale hospital in Carmarthen on the back of this referral. I saw him privately via my Bupa cover, but Bupa only covered my consultation with him.

Therefore, I can either have what he called the Occipital nerve block injections with him, or I have an NHS apt on 9th Sept with a Dr Javaid at Neath Port Talbot hospital, and she can also provide these injections. I am unsure of either of their experience with APS patients.

Today Dr Turtle provided some options to me for treatment, as we have exhausted most others over the last 8 years, and I've been diagnosed with chronic migraine now which has become extremely dibilitating.

The options were:-

- Occipital nerve blocks.

- Botox injections.

- Gabapentin.

Any experience on these options for chronic migraines would be greatly appreciated please.

Great to have such a community here, thank you so much Take care x

[Lure2]

You have headache, an APS-diagnose but no APS-Specialist and on warfarin.

May I ask how long time you have been on warfarin and on what therapeutic level your Consultant has put you?

My neurological symptoms disappeared on warfarin but I had only sharp pain for a minute and Auras and vision-issues and not any real headache (but that is individual). We usually need an INR around 3.5 to feel good sometimes higher. Important is to keep the INR steady also.

Kerstin

[AnnNY]

Neither Botox or Gabapentin did much for me. I never tried the other. I can't get a heperin trial in the US, because I am seronegative, but I suspect it was the cause of my migraines, and I guess so did my old rheumatologist who told me to take aspirin.

[Rosemary76210]

Have you removed beer, wine, cheese and hot dogs (nitrites) from your diet? My son who gets migraines had to give up chocolate, which he loves.

[Lure2 in reply to Rosemary76210]

Hi Rosemary,

As to your APS, if you take warfarin, CONSTANCY is the key!

I always drink a glass of redwine for dinner and I do it every day but not more than one glass. Never more, because that would mean the opposite.

I also eat a little bit of dark chocolate every day as it is healthy and very good.

Does your son has APS also? Is his migraine better without the chocolate?

If I am dining out, I take my K-vit vegs with me or take them when I come home in the evening. People understand. We need a lot of green vegetables.

Best wishes from Kerstin in Stockholm