ET in association with MIGRAINES

[azaelea]

Thank you to all friends who replied to my question above. I saw GP this afternoon and have been referred to T.I.A. Clinic for check up. Awaiting their call within a few days. Will post again when the outcome is known. I appreciate your views. Regards Fran

[hunter5582]

Glad to ehar you followed up and got a response. Wishing you success in getting seen soon.

[Jelbea]

Hi azaelea - I have only just read your original post about your migraine. I am 82 yo with ET jak2positive and I take Hydroxycarbamide 500 mg Monday - Friday with 1000 mg Saturday and Sunday. I also get migraine with aura and on several occasions have suffered speech difficulty.

When I was in my sixties I started to get migraine with aura and was diagnosed at a migraine clinic in London. I was getting several auras daily at that time and was started on 75 mg aspirin daily. After starting aspirin I got perhaps 2 migraine in a year for many years - often with very little pain but sometimes severe. This continued for years until in the last six or seven years I began to get more auras with or without bad headache, but I had my first migraine with speech difficulty about that time. I was terrified the first time it happened. It lasted about two hours. I knew what I wanted to say but could not get the right words or they were very mixed up.

Anyhow the doctor I spoke to at the time did not think it was TIA. I was not diagnosed with ET until 3 - 4 years ago. I have continued to have speech difficulty with some of the migraines. I now close myself away and rest whilst this is happening as it can be very upsetting. I find this is the best way to deal with it.

The above is leading up to what happened to me earlier this year. Like you I have other medical problems. In February last I developed a urinary infection and as I am allergic to penicillin and sensitive to very many other medications I was given trimethoprim and had a horrific reaction. I was admitted to hospital where it was thought I had developed aseptic meningitis.

Anyhow long story short I survived this but platelets had risen quite a bit as my medications had been interfered with. I started to get much more frequent migraines and my MPN specialist increased my hydroxy to the level I am now taking. It took months for my platelets to get down to approx. 350 but when this happened I now have migraine very seldom. I suspect much the same happened you when your hydroxy was interrupted. I have noted that if my platelets are nice and low I seldom get a migraine.

I should also mention that although I am on Xarelto (blood thinner) I also have to take 75 mg aspirin on alternate days. If I do not take the aspirin I get migraine and although there is an added risk of a bleed I think this is worth it to stop the migraine as far as possible.

I am sorry this is so long but I hope it helps and also may help anyone else with similar problems. This site is so good for sharing our experiences.

I wish you all the best and hope you get this sorted ASAP

[azaelea in reply to Jelbea]

Hi Jelbea, thank you so much for your message setting out your history and problems. I am pleased you seem to have the Migraines under control now. I was started on Aspirin when ET JAK 2 was diagnosed over six years ago but I had a black tarry bleed which it was thought was caused by Aspirin and was in stomach so was changed to Clopidogerel which I still take daily . I was due for gastric scan but as the Pandemic began just then they stopped doing all scans and it was never investigated further. With Hydroxy and one B.P. Pill being stopped when I caught Covid in August I think this has upset everything health wise. I have an appointment tomorrow at hospital at T.I.A clinic after referral by GP so will post the outcome on here. I agree with you this site is really good to read about similar health problems other people have. I am 88 by the way. How awful for you ending up so ill with the medication reaction from trimethoprim . I too have reactions from many drugs though thankfully up to now not so drastic as you . Take care, all the best.

[Yarnhabit in reply to Jelbea]

Your post is really interesting and is similar to what I have been experiencing , I ended up having an MRI but was fine then was put in a low dose blood pressure tablet, that and the baby asprin seem to have my migraines in check. I am also allergic to penicillin so will watch out for the drug you had should I ever need it. Thank you for sharing, wishing you well.

[Jelbea in reply to Yarnhabit]

I am glad my story helped. It was a bit long but I did hope that the detail would help others suffering in a similar way. I hope you continue to have control of your symptoms and all good wishes.

[Jelbea]

Wishing you all the best for your app. tomorrow. The waiting for these is always difficult and that is why I was letting you know of my experience in dealing with this upsetting migraine symptom which still scares me when it happens.

I look forward to hearing the outcome.

[azaelea in reply to Jelbea]

It certainly did help me reading your story and you will see the post I have just written regarding my hospital visit.

[Jelbea]

Glad it helped and that you had a very positive appointment. All good wishes