Story about Hemicrania Continua , Cluster Headaches.

My journey

Mar 16, 2021

Year Condition Began: 1987


I have suffered with severe daily headaches, severe nausea and occasional fainting from the age of 5. I have been treated for migraine's all my life, until 2014 when my wife noticed I was taking more and more painkillers and ibuprofen to try and help get through the day. I spoke to my Doctors and they referred me to the Sid Watkins Centre in Walton, Liverpool.

First appointment: February 2015 I went through 6 months of keeping a headache diary and not having any medication at all (what a struggle).

Second appointment: August 2015 Once my diary was checked by my doctor I was treated for CLUSTER HEADACHES.

Third appointment: November 2015 At a 3 month review I was told that I have HC and not cluster headaches. I began my HC treatmen, 75mg indometacin along with Fluticasone Propionate nasal spray, omeprazole and Metoclopramide an anti-sickness pill.

 

May 2016 At my recent review my doctor noticed I’d suffered some gastro problems so gave me double the dose of anti-gastro pill. He stated that indometacin was still the best treatment and if I suffer and more gastro problems he would change my anti gastro pill and try and keep me on indometacin for as long as possible. Next review should be in December 2016.  


Update: 0n 2nd February 2017 I have an appointment for nerve block injections.

Since my last update. I had my nerve block injections, I had 8 injections one above each eye, one by each ear, then four in my head at the back. (2 greater occipital nerve injections 2 lesser occipital nerve injections). The procedure took a matter of 2 minutes and my head felt very uncomfortable for two days. On the third day I was headache free, this lasted for two days then I was back to square one. I was then placed one FLUNARIZINE 10mg daily and these have helped a bit but I can only take them for 6 months. I is almost up so I am going in for the Botox injections.

Received Botox injections on 23rd September 2017. Nothing has changed yet still the same, looking forward to my next round of injections this is when I should start to feel the benefit, l also hope I get the funding approved through the NHS.

BOTOX was brilliant and work for a roughly 6 month, until I fell down the stairs and banged my head. Botox stopped working for me then. So I was switched back to nerve block injections and on 22nd February 2019 started taking Celcoxib too, but struggling with this. Hoping to get approved funding from NHS to have gamma core treatment.

18th May 2019 Today I went back for nerve block injections and my consultant is referring me to the gamma core clinic. In the mean time I am have stopped celecoxib has I couldn't tolerate it. I am starting a calcium blocker verapamil, it's used for high blood pressure and headaches. I have to have an Echocardiogram before starting the treatment and everytime I have a dosage increase.

Started verapamil (July 2019) and this medication is helpful. I've had less flare ups. Been taken it for about 3 months now, feeling a lot less depressed.

I have been to meet a different consultant 28th September 2019 and I have been reclassified as atypical Cluster Headaches with waving migraines. I as still taking verapamil, but now I have Sumatriptan injections and will be on oxygen too. I have to go into hospital, on the ward in January 2020. I used my first injection last night. The first one the needle was bent and I thought I was doing everything wrong. I switched the cartridge and it took me a while to pluck up the courage to trying it after the first cartridge problem. I did it and about 15-20 minutes later my head was ok. I felt drained though. Woke up today feeling good and keeping on to of my verapamil as a preventive medicine. Not been given oxygen yet.

Started on Oxygen therapy Feb 2020, this has been helpful in pain relief.

Jan 2021 I am using gammacore along side my medication as a daily preventative.

Know someone who should read this story? Share it

1 comment
0

Since my last update. I had my nerve block injections, I had 8 injections one above each eye, one by each ear, then four in my head at the back. (2 greater occipital nerve injections 2 lesser occipital nerve injections).  The procedure took a matter of 2 minutes and my head felt very uncomfortable for two days. On the third day I WAS headache free, this lasted for two days then I was back to square one. I was then placed one FLUNARIZINE 10mg daily and these have helped a bit but I can only take them for 6 months. I is almost up so I am going in for the botox injections.  

Commented 6 years ago Terry Eustace 3211

Login or register to leave a comment


A Hemicrania Continua interview

View interview


Hemicrania Continua and depression

Hemicrania Continua and depression

Hemicrania Continua treatments

What are the best treatments for Hemicrania Continua?

Hemicrania Continua diagnosis

How is Hemicrania Continua diagnosed?

Hemicrania Continua advice

Which advice would you give to someone who has just been diagnosed wit...

Hemicrania Continua diet

Hemicrania Continua diet. Is there a diet which improves the quality o...

ICD9 and ICD10 codes of Hemicrania Continua

ICD10 code of Hemicrania Continua and ICD9 code

Latest progress of Hemicrania Continua

What are the latest advances in Hemicrania Continua?

Is Hemicrania Continua contagious?

Is Hemicrania Continua contagious?