Hi,


I've been on this site on and off, like the beast, for years and only just signed up.

I'm 31, female, married, one 5 year old son and from Huddersfield, England. I have suffered CH for at least 12 years and migraine since being 6. I have only just this week had a diagnosis. I think, hope, I'm at the back end of my cycle. This bout I've been given, maxalt, amitriptyline and propropanol, I don't think either has helped (defo not the maxalt), I think the cycle is ending. I still have some shadows, I always called it lurking, but had first pain free night last night for 4 weeks.. I had some sort of fit earlier this week (they don't know why) and the lovely doc in a and e said I have classic cluster headaches and is writing to gp to get me on more appropriate meds. I could have married him! I burst out crying and he was very concerned that I was having a hit and I had to explain I was so relieved that someone was finally listening to me. I think the main thing I'm struggling with is loneliness. No one can understand the fear and pain I feel every night... Then I found you guys. And oh no, others suffer with this, but we aren't alone anymore!

So currently I'm on nothing to help the cluster monster but high blood pressure meds. Seeing GP today so I'll see if he's listening to the A and E doc and is ready to help.

Just wanted to say hi, thanks for the help you've all already given me over the years of me lurking. And I think I'm just looking for some kind of acceptance with someone that's not going to roll their eyes at my "headache". I feel like Harry Potter when you-know-who is trying to get in his head, it nice to know I'm not going mental, being attacked by an evil wizard or just plainly the only person with this, even though it breaks my heart others doing this. I don't know how chronics cope. Hat off to you guys.

One question, does anyone else's hair hurt on the cluster side when you get shadows? It's very strange and I think why the docs kept saying migraine, they don't understand its not in my head but actually the base of my hair.

That's enough from me now.... Sorry
But mainly. THANK YOU x

Thank you Bob,

I have been looking at OUCH, although I've not been in contact yet. I will do when some of this exhaustion eases and i can string an intelligent sentence together without having to use using spell check and taking forever.

I also have a very kind and generous set of in-laws who said they'd pay for me to go private if GP is unwilling to help. I will see what he says after seeing all the hospital test results and letter from A and E. I can't do another cycle unaided and safely look after my son. I think the fitting episode was due to my body saying enough is enough and shutting down for a minutes peace and reboot. But what if it happened when I was alone with my son, I can't bare to think of him alone and scared, he's too little to to see his mum like that. 

I will definitely be touch with OUCH and carry on reading these forums. 

The meds you were put on are not front line, nor are they terribly effective for CHs. They are more suited to migraines. The kind of meds we tend to use most often are verapamil (vey high doses like 480mg+), O2 (very high flow, 25lpm+), imitrex injections, migranal nasal spray, etc. There are lots of tricks and you can learn those here. The hair hurting thing is actually pretty common. Not fun, but common. Good luck and God bless. lance

Just back from docs. Seems he's paying attention. Hes given nasal spray, did ask if I wanted the injections but thought I'd try that first. My pulse is still way too fast so hes meeting with the boss to see if he should send me to a neurologist or a cardiologist, or both. He was also concerned about my weight (ive always been super skinny) and said when we get my head sorted he'll help with that too. Feeling a great relief he's taking me seriously and is prepared to take me on and help beat the beast.

Hi
He's given me zomig which from searching on this site and others seems fairly out of date for use with ch now? I still found plenty of folks that said it had helped them though. Im confident my cycle is ending so fingers crossed I won't need to test it for a another year. I'm just so relieved its in my records now so next time I can get treated properly quicker. He was more concerned about the state of my heart I think and is keen to get that sorted. I've had 4 ECGs just this week. My 5 year old son is getting to be an expert!

inspector monkey wrote on Jul 26^th, 2013 at 6:36pm:


Hi IM,

If tablet...yes..worthless...

But...I use Zomig Nasal Spray as my abortive of final resort....99% effective...just danged expensive

Best

jon

inspector monkey wrote on Jul 26^th, 2013 at 6:54am:


There is a possible issue with taking both maxalt and propranolol at the same time - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Quote:


Discuss this with your doctor / pharmacist (they are very knowledgeable about drug interactions).

Otherwise, as others have mentioned, this combination looks like you have just been given medication aimed at migraines and not CH.

Sorry, not sure I made sense. The propranolol was prescribed as use for blood pressure lower-er rather than CH preventative.

I have also read somewhere, on this site maybe, that I probably shouldn't be drinking redbull with already high blood / fast heart. I have been doing for the day time shadows but think I will try without and see if it helps. Roll on winter, never had a winter cycle..... yet.

Ok cool. That's brilliant. I'm not taking verapamil so will carry on with the Red Bull since *touch wood* its working. Although hubby has started to think I have a Red Bull problem. I think he's started to think I make it up. He's seen the night time attacks, sometimes, I usually pace the garden so I don't wake anyone up, but he can't understand when I say he lurks during the day. Sometimes it's worse than a hit... It's the anticipation of knowing the beast is there and not trusting when he'll pounce.

inspector monkey wrote on Jul 26^th, 2013 at 6:54am:


Funny to read this because my husband, who suffers from CH mentioned this just the other day for the first time and he used exactly those words..."hair hurting."  It is strange but very specific.