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Light at the end of the tunnel...

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#1 Thu, 26/03/2015 - 12:20
Phimo
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Last seen: 7 years 9 months ago
Joined: 07/03/2015 - 10:21

Light at the end of the tunnel...

Having experienced a Roller Coaster of mis-diagnosis, treatments and witchcraft over the last few years, I finally seem to be in a position to control my ECH.

I orginally suffered from acute migraines which gave way to what my GP at the time called "Lightning Headaches" which were, I now understand, single event CH attacks which came about once a month. I now have bouts from January - April amd July - September.

Since finally being correctly diagnosed by my GP ( the 3rd I have seen) I have now seen 3 Neuro specialists. The last, very eminent Neuro poored scorn on his predecessors in no uncertain terms and informed me that they no longer worked for the NHS nor in this country.

Neuro #1 prescribed Verapimil as a preventative but told me not to continue with it if my headaches returned. Neuro #2 prescribed 500mg Co-codomol, 800mg Ibuprofen and very strong coffee. She refused to let me have Oxygen and then said that I had refused it in her letter to my GP! My GP had already prescribed RizaTriptan in the form of Maxalt "Melt" lozenges but they only took the edge off of the headaches. 18 months ago my latest GP gave me Oxygen which was 100% effective until my last bout which started a month early in December 2014.

I started getting repeating headaches in the night, up to 4 or 5 repeating every hour and although the Oxygen stopped the pain, they came back with a vengeance. The cluster was all over the place, stopping and starting, going from medium strength to excuciating and then I was introduced to Sumatriptan injections and my life changed overnight!

The repeating headaches didn't come back if I injected myself and the frequency dropped to 2 per day. I really wish I had been aware of the injections before. My cluster was still coming and going until the latest Neuro prescribed steroids for 2 weeks while I introduced Verapamil and I have now been headache free for 2 weeks.

So, I guess the point is, don't give up and don't believe that what you are being told is the truth until you have proven the effectiveness of the treatment offered. I feel lucky that I have finally found a GP and Neuro who seem to know what they are doing and I am on a drug regime that, so far, is working perfectly.

 

Sorry for the long post but I feel so relieved I had to tell someone!

Phimo

Sat, 28/03/2015 - 18:57
Val
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Last seen: 1 month 3 weeks ago
Joined: 21/03/2012 - 15:16

So glad things worked out for you Phimo, next time you'll be ready.  Did you neuro say anything about using the sumatriptan injections next time round?

 

Sun, 29/03/2015 - 15:51 (Reply to #2)
Phimo
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Last seen: 7 years 9 months ago
Joined: 07/03/2015 - 10:21

Hi Val, my Neuro advised my Doctor that I should have full access to Oxygen and Sumatriptan injections as well as the Steroid/Verapamil regime so no problem there.

Phimo

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