Query re: Occipital nerve block (GONI)

[SteveRN]

I normally receive Occipital nerve block injection on the right side every 3 months for my migraines but since my last one I have started on Warfarin. At my last visit the injection was performed by a nurse who I have never seen before and I mentioned that I might be switching from clopidegrel to warfarin and she said that I would have to stop the warfarin a few days before my next visit is this correct. I am also considering switching to Botox as opposed to the GONI as it is sometimes not as effective as at other times. I get headaches most days my last INR was 2.6 2 weeks ago and my range is 2-3 I also need to chase up my haematologist referral as I have still not been seen.

[lupus-support1 Administrator]

You should discuss this with your doctor ie a specialist.

With good wishes,

Ros

[SteveRN in reply to lupus-support1]

Hi thank you for the prompt response I spoke to the specialist’s registrar last week who said he would do a referral for the Botox but did not know if they would do it.

Kind regards

SteveRN

[MaryF Administrator in reply to SteveRN]

Hi, it is pretty important that you do bring this up with your main consultant, as soon as possible, do your migraines get any better when your INR readings are at the higher end. Also do please get them to check your levels of B12, Folate, Ferritin plus if appropriate a Thyroid panel. I know if B12 is low it adds to migraines. Good to rule it out. MaryF

[Lure2]

I think I read that you should have an appointment with a Hematologist very soon.....?

As HollyHesky also wondered was if you are on an INR high enough for your symptoms. Now 2.0 - 3.0. Most of us with neurolgical symptoms need an INR of 3.0 - 4.0.

You must try to get in close contact with a Specialist of APS. Perhaps you symptoms would be much better and then you may perhaps not take the Botox any more. We have too thick blood that has to be stable and properly anticoagulated!

[SteveRN in reply to Lure2]

Hi Lure2

Ideally I would like to get my inr raised to 3-4 this would hopefully as you and Hollie point out reduce my symptoms therefore alleviate some of the issues. I think it’s a case of pushing for earlier appointments and getting the doctors agree to change the inr

[Lure2 in reply to SteveRN]

Yes, but in that case you must have a Specialist who is daily working with people with autoimmun illnesses like APS and SLE and Sjögrens (usually a Rheumatologist or a Hematologist) and who understands how important it is for us to get our blood enough thinned to get rid of our neurological symptoms.

We are all different with different types of APS (many have other autoimmun illnesses together with APS) but most of us especially with arterial clots need a higher INR but the Doctors do not understand this and are afraid of us getting a bleed. For many of us it is also difficult to keep the INR in range (especially if Lupus Anticoagulant positive) but with selftesting perhaps and the help and understanding from the Specialist it is possible.

Before I started Warfarin I had a Neurologist at the hospital who were also working with Botox, but as I had also Amarousis Fugax (and other neurological APS-symptoms) and she knew about APS she suggested I should start Warfarin and suggested a Hematologist at the hospital. This was 10 years ago and I am still with that Specialist and on Warfarin with an INR of around 4.0.

As prof Hughes always said: "we do not bleed from this illness but clot".

Good Luck!

[SteveRN in reply to Lure2]

Hi Lure2

This is why I am keen to see a. Haematologist ASAP as I was referred at the end of April when I was given my diagnosis but have been told there are no appointments available at present, my original clot was an arterial one so as you can imagine it seems logical to get my inr range reviewed. I am also keen to go down the route of self testing although the nurse in the clinic said nobody does it.

[Lure2 in reply to SteveRN]

Are you positive to the antibody Lupus Antigoagulant? I hope this Hematologist is one up to date with APS.

I am positive to all the three antibodies and in high titres but selftest since several years. I live in Sweden and have got exellent back up from the hospital with vein-tests at the lab and equipment for the selftesting.

Please tell us how it goes for you. Wish you well!