Constant headaches or should I say head hurts

[Dot69]

These are just awful I can't function properly my INR is high which they are trying to bring down. I thought after 2 years i should feel better not worse, or am I just wishful thinking

[Lure2]

You were so happy some days ago to be able to see a Specialist of APS !

Have you seen him now and what INRs do you speak of now? Is he trying to get them down?

Could you please tell us a little more so we understand your situation.

Best wishes from Kerstin in Stockholm

[Dot69]

I see a specialist tomorrow for the first time so hope for answers. My INR last week was 4.3 I return tomorrow for another test

[Dot69 in reply to Dot69]

Warfarin clinic has reduced my dose that's all

[Lure2 in reply to Dot69]

If the INR was only 4.3 LAST WEEK and they try to get it down and you are taking a test today Thursday, It could be very low INR today.

Have you thought of selftesting.

Kerstin

[Dot69 in reply to Lure2]

I read on here about self-testing no one has talked tome about this

[MaryF Administrator]

Hi I hope you can do some real team work with your specialist to sort this out in detail, please let us know how it goes. MaryF

[Dot69 in reply to MaryF]

Came away from specialist appointment not happy Told headaches are migraine and he could prescribe beta blockers

[MaryF Administrator in reply to Dot69]

Did you see an actual Hughes Syndrome/APS specialist? MaryF

[Dot69 in reply to MaryF]

Yes he is I of a team of a Professor I got from your list. My doctor refereed me in February

[MaryF Administrator in reply to Dot69]

You may have to write a letter mentioning the headache increase with the change in INR! Sorry it is so tough for you. MaryF

[Dot69 in reply to MaryF]

Soooo frustrating it seems one has to fight to be heard and taken as an individual not text book Thank you Mary x

[Dot69 in reply to MaryF]

Didn't get on as well as I'd thought I would told my headaches are migraine, anyone else get told this?

[ndstephens49 in reply to Dot69]

Yes Dot69, have been told headaches are migraines. Have had them since childhood. Aspirin always helped relieve them. Tylenol does NOT help.

So far I need aspirin with the Coumadin to relieve headaches. Maybe with my newly raised Inr of 3.0-4.0 my headaches will diminish. I'm not holding my breath, though.

I've had chronic daily headaches for 53 years.

Maybe your MD would consider adding aspirin if all else fails.

And yes, I took beta blockers for years without relief.

Good luck

Nancy

[WendyWoo50]

Get the best out of your appointment !

Have u done ur appointment prep?

Please read all of this post 😃

1) a typed list of all medication including over the counter and health shop meds

2) a typed list of all diagnosis and where possible - dates, treatments and consult details

3) print a body outlive and mark on every single symptom u have. From thinning hair on ur head to very dry skin on ur feet and everything internal and external in between.

4) if ur inr has been erratic a list of the last six months readings. If they are very erratic, like mine, a graph is a good thing to do. I just googled graph paper and printed it out.

5) a list of the important questions and points u want to discuss. Limit it to the most important things. A list will help the specialist to manage their time and keep u on task.

6). any other evidence u think would help.

Photocopy everything and present him/her with it as the appointment goes on.

I know it's a lot to do, but half the first appointment is taken up by him/her writing a list of ur meds, ur conditions, their history, ur symptoms, how ur inr is going ... that there's no time left to cover ur questions and by that time u have forgotten anyway!

It's good to try and take someone with u. Give them a copy of ur questions and ask them to jot down his/her answers.

As soon as u can after (even in the car) write down everything u want to add to ur friends notes. By the time u get home u will have forgotten.

Good luck and I look forward to hearing how u got on. 💋

PS I do all that each time I go to see someone. I have a folder and I take it to all appointments. They all know that now and say it really is very helpful.

What is ur inr range. Mine is 3.5-4.5. Below 4 I have the most awful Migraine. They try n get mine down when it's over 4 but I say.

" It's still in range. I don't want to go below 4 as I'm so ill then. "

And finally they always agree to leave it alone. Maybe u need to discuss ur target. There's lots of evidence on here to support high inr.

Our administration team can help u there - print some off in case u need to argue ur point. 💋

[Dot69 in reply to WendyWoo50]

Thank you I did go armed with information I've kept of my 'funny do's' he didnt ask for them

[Lure2 in reply to Dot69]

It is important that he is a Specialist , that is SPECIALIZED in Autoimmun illnesses which HS/APS is. Are you sure he knows our illness? Is he on our list here and is he a Rheumatologist or a Hematologist?

I am also on betablockers since several years but not for migraine but for high bloodpressure. Do you have high bloodpressure? What did he say about your iNR today. Was he satisfied and had it gone down today?

Hope I have not asked too many questions and made you worried. This will be ok you will see! Hope you will stick with us!

A big hug from Kerstin

[Dot69 in reply to Lure2]

He's actually a neurologist and although I was down to see a rheumatologist they passed me to this gentleman I did get the name of the specialist from your list and was lead to believe it would be himself or one of his team who I would see. My blood tests for my INR are taken at my local dr's. I get the results phoned to me and I'm told what dose to take, if they don't ring it means I'm 'in the zone' so I continue on the same dose then they will let me know when I need to go for a further INR blood test, my blood pressure was fine today, my daughter in law was with me today which I'm grateful for, she fought my corne😊 and an MRI scan will happen to see if there's been any changes since 2015 to try and find out why I'm having headaches which he said are migraines. You are all so supportive I can't thank you enough for your support and information x

[WendyWoo50]

I am so sorry u r having such a struggle.

I take beta blockers for a heart condition but it has made no difference to my headaches which started when I was 11 and I have had every day of my life since (except when my inr is over 4) That was 1978 - Well before Hughes was discovered

I saw a neurologist many years ago and he said I had migraines and gave me Toparomate. Of course it did nothing.

I know it's hard but please keep fighting I almost gave up hope but at 50 I'm getting there.

U really MUST see an APS specialist. Print some of these replies off and go to ur gp with ur daughter in law for support.

Keep a record of how ur headache is and how ur other symptoms are each day and add in ur inr when u have it done. I mark mine 1-10 with : 1 feeling fantastic 10 feeling the worst possible.

Medical professionals want/need to see written evidence of how a treatment/condition affects you etc

Also record if u take additional pain meds as that will change ur number.

Sometimes a day can change from one thing to another so I record that too.

Once u get a diagnosis u will improve I'm sure. Keep talking to us and we will do our best to support you.

Lots of love and light.

Wear red when you go to appointments because in colour therapy that gives you strength, courage and energy 💋

[Dot69 in reply to WendyWoo50]

Thank you for your supportive reply I do write my 'off' days down the ok days I don't bother as they are pretty good days in comparison. I was hoping our appointment was going to be more positive than it turned out, so maybe I was expecting too much. I did think they would want to see my diaries and my INR evidence which I went armed with. Hey ho!! today is another day which is always a bonus😊 X

[WendyWoo50 in reply to Dot69]

I think u were in the wrong place. Seen by the wrong specialist.

I'm sure with an APS specialist it would have been positive x