I wondered if anyone has had these symptoms and can advise?
Since an admission to hospital in 2012 with stroke like symptoms (see previous posts) I have had left sided head pain on and off in the same place each time . The last time I had this head pain ( I call it that because its not like a headache) was July last year.These head pains do last quite a while.
I have currently had the head pain for a month and it's continual with varying degrees of pain. I have also noticed this time that my scalp is tender to touch and if I touch/press my scalp the head pain is more intense. I don't get any eye pain or disturbance and don't need to go and lie down in a dark room like I used to with migraines sometimes. I am able to use the laptop, watch TV etc. The only other symptoms I have had are neck pain but not all the time, and I find I can sometimes get a feeling that I might faint when I go out for a short walk.
My GP gave me cocodamol when I saw her 3 weeks ago but it has made no difference. She has now asked me to try Sumatriptan and I will be collecting the prescription today. I have a neurology referral but no date yet!
This head pain is really getting me down as I find it quite debilitating.
If anyone has had a similar experience I would love to hear from you.
Thanks
Jane
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janekins
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I forgot to say that my GP wonders if its hypersensitivity. Interestingly when I went to a podiatrist a few months ago he said my feet were very hypersensitive!
Hi there, I think you may find the advice of Hidden useful with regard to this, as Lynn had a residual and serious headache for a very long time after her stroke as she recovered. I hope your INR is at a good level, and also that any other issues have been checked out including Vit D, B12, Iron and Thyroid issues.
My INR has been too high recently going as high as 5 and every time it went back to the top end of the range (3-4) the next reading would be up again.This was in contrast to earlier this year when the opposite was happening. I would keep dropping below 3 and take clexane. Then when I was back in range it would drop again.
I have self tested for a number of years and get checked at the surgery every 2 weeks. I also take a list of my readings to them because any minor changes to dosage or increase of vitamim K foods to get me back on track that I have made need to be seen because their results would otherwise show I'm reasonably stable which I'm not!
I have B12 injections which usually helps with fatigue. Other tests you have mentioned have been done in the past but probably need to be repeated.
Thanks for your reply. Its always good to hear that someone has experienced similar symptoms if you get what I mean lol.
We had to come back early at the end of June from our holiday in France because I had severe exhaustion, probably from the heat. I use a mobility scooter if we are going any distance and a 3 wheeled walker so I can walk short distances so it wasn't exhaustion from walking. I couldn't do anything and my GP thought I might have got a virus ( my husband got similar symptoms a week or so after me). My headache started about a week after I started feeling so exhausted and I know I have been a bit stressed about things, though I try and relax as much as I can. I just wish it would go away. The first time I had it in April 2012, it lasted 8 weeks.
I'm a bit concerned that Sumatriptan is contraindicated with TIA's and strokes, though an online friend with APS says that most triptans say the same thing.
I will mention the stemitil and Topiramate to my GP. I trust her judgement, having been with her for 28 years.
I wonder how much your Warfarin-treatment has to do with your problems though.
You have earlier told us about your difficulties with high INR and too low INR also.
I would like to know if you 1) is Lupus Anticoagulant-positive 2) have tested your INR in the vein at a approved lab several times to see if there is a difference to the fingerprick-test?
If you have Warfarin (there are other possibilities like LMW Heparin (Fragmin)) you must be careful to eat the same things and same amount of those things containing lot of K-vit like greens.
Also CONSTANCY with drugs, exercise, wine and alcohol. Make notes otherwise you do not remember what you have done.
I agree with APsnotFab that you do not need a Neurolgist as me have found here that they do not "get" that we have too thick blood and that is the main problem. First of all you must be properly anticoagulated and also get a "headache centre" as APsnotFab suggests for your difficult pain from the head.
i used to always have my inr taken in the vein before my GP surgery got their coaguchek machine. I already had mine and used to check what the readings between vein and finger prick were. there was alawys only a difference of a maximum of 0.2 so fairly similar. I have also tested positive for Lupus anticoagulant.
I am already taking the good advice that you previously gave me of writing down what I eat so that I can compare my INR results with my food intake. I still find it a bit strange though that having been on warfarin for 18 years my INR results seem more inconsistent than ever before.
I agree that neurologists 'don't get it '! I think I need to be referred to some other departments instead!
I am glad you make notes but sometimes we do not know what causes the inconsistent readings. It is difficult when we have got LA. You have started new drugs I think you mentioned?
You only test every 2 weeks and during those days the INR can change a lot. I only see my GP if I have a bad cold or things like that otherwise I always consult my Specialist.
Good if you can follow the advice from APsnotFab as she knows a lot and change your Neurologist to for ex a Rheumatologist and see a special clinic for headache.
Have you tried LMW Heparin (Fragmin)? I guess not. If I were you I would do as APsnotFab says and afterwards if INR is difficult to manage you could perhaps try Fragmin-shots instead.
I am in SC, US and have had similar scalp tenderness/pain that is intermittent. My Rheumy does not think it is APS related, but it is a symptom that only started this past year and has been pervasive. It started after I had what I think was a TIA. Per the typical, the MRI did not show any indication of a TIA. I was diagnosed with a severe bit D deficiency and BPPV a few days later by the specialist at the hospital. So, my doctors all agree that it was not a TIA, but rather the BPPV that caused my sudden onset of neorological symptoms. Nonetheless, that is when I experienced my fist bought of scalp tenderness/ pain.
You have not written anything about your self when you joined our Forum but from what I can read above you have got a Rheumatologist and have a diagnose of HS/APS. Is that correct?
What is important if you have what I think, neurological symptoms from your HS/APS, is that you talk to a Specialist of autoimmun illnesses (all Rheumatologists are not specialized in this illness) and that he also understands that it is common to have micro-emboli and clots and they will not show up on a Scan of today. I have got that.
I do not know what BPPV is though. What I now hope is that you are put on anticoagulation of some form as you should not go and wait for another TIA or worse if you have this illness. Were you diagnosed by antibodies? All the three of them?
We can have curious and unusual neurological symptoms from our head sometimes but it often helps when the blood is thinned steady and properly.
Lure2 Yes, I have been diagnosed with APS; elevated cardiolipin antibodies and elevated beta 2 glyco protein. Was initially tested after an unprovoked PE. Have had several DVTs. My tests were repeated three times, 12 and 16 weeks apart.
As you have been on our site before I guess you have seen that we are nagging about having a Specialist of autoimmun illnesses. That is really very important!!
Also to be anticoagulated. Prof Hughes (who found this illness 30 years ago) suggests Warfarin at a rater high level or LMW Heparin (Fragmin) -shot. The oral drugs are not always approved for us as we need high INR-levels
Our neurological symptoms usually calm down (sometimes for good) with anticogulation so please do not go to a Neurologist for your symptoms as perhaps (I do not know what BBPV is though) I think you may have micro-clots (many of us have that here) and they are not seen on a Scan of today and that tenderness I have also felt sometimes.
Best I think would be if your Specialist could let you have a trial of LMW Heparin (Fragmin) and first perhaps try with baby-Aspirin and see if that helps a bit. I started with Asprin but got worse and had to take Warfarin to get rid of my problems.
Dear Jane ... it sounds to me that you might have temporal arthritis. The pain is on one side and not like "normal" headaches.
The scalp gets very tender and painful. I had the same 6 years ago and spent two weeks in hospital. I was for three years on high dose of steroids and occasionally I still have an attack and go back on steroids as it helps with the pain. Please go and have it checked out. A bloodtest will confirm very quickly if you suffer from it. Good luck Hedwig
This was actually one of the conditions I wondered about. It seems to be the closest as far as the tender scalp pain. Was your pain continual, but in varying degrees of pain? Mine never quite goes away. If I touch the top of my head where the pain is, it starts getting worse again. So I try not to touch it obviously! The best day in the last 4 weeks was yesterday and I was hoping the pain was going to go away but woke up in the night with it! My GP did an ESR test on Wednesday but said it was normal.
I'm trying to forget about it as I've always done with my aches and pains each day though its a bit hard!
Hi Jane your GP should not accept the results of your tests and investigate it further. Yes the pain was constant and one automatically touches the spot where the pain is and that just does not help! Even washing your hair is painful. I tried cold water .. hot compress.. then my GP went on holiday and his replacement called the hospital and I was there for two weeks. Please do persist and even though steroids have horrid side effects (bloating and weight gain) the pain disappears completely after 24 hours! Take care kind regards Hedwig
You must stop talking with your GP about these difficult issues as he must have difficulties to understand it. Please listen to APsnotFab as she has a lot of experience.
Try to get to a center of some special kind and find a Specialist of autoimmun illnesses who really understands the problematique. He may understand what you talk of.
Have you noticed if the pain has been less when you have been in range above an INR of 3.5 perhaps?
This illness can be difficult for some of us so we do need a Special Doctor who can treat and help us.
Do you mean headache? Do you see Dr Holmes or Dr Katen Breen? I read that in a previous post.
I just wonder if you are enough and stable anticoagulated as you have had a lot of neurological symptoms incl eye-issues. The Neurologists are not always the best Doctors to understand that we have very sticky blood. Perhaps you need other drugs also not only anticoagulation.
Yes, I have experienced the same. It almost feels spongy, as if it is swollen. My doctor prescribed Clobetasol - a clear topical liquid. It helps. It comes and goes
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