Hello


#1
Hello have been diagnosed since July 2011 at 53 have had a few interesting experience's since then. I also have a condition called cluster headaches and after a recent examination(at least it put a (smile on my face) probably have crohn`s disease, to be confirmed by consultant but already done so by my Gp.. Is there anyone who has the knowledge to let me know how these conditions may interact?, my Parkinson`s consultant had heard of cluster headaches but could not help me. many thanks.

#2
Hello Giles and welcome to the forum. I too suffered from cluster headaches before my diagnosis which was 12 years ago. Interestingly though, My headaches were almost cured when I started replacing dopamine!!!!!

I have mentioned it to my neuro's over the years but they all tell me it's not connected. I believe that it is because I suffered those headaches from about ten years of age a ndI was 50 at dx. That's a hell of a long time and just too much of a coincidence that they would stop when I started taking PD meds.

Anybody else with a similar experience?

#3
Hi Giles,

I used to suffer with cluster headaches a few years before dx and now I think about it they were accompanied with the same sort of nerve pain down my arm on my PD side that I got just before the tremors started in my arm and then leg leading to dx six months later.

#4
Hi glenchass and Eileenpatricia

thank you for your replies, I suffered my first cluster headaches at approx 18 I had recently came out of hospital after a 5 months stay for bacterial meningitis, had no idea what they were told severe migraine finally received formal dx mid 1990``s at Walton neurology, now take oxygen as required.

Suspect I had parkinson`s 2002 aches and pains was sent to a rheumotology clinic no formal dx said I may have rheumatoid arthritis could not formally say so, just carried on then in 2009 went through a very stressful time and my body went into revolt frozen shoulders, right leg/foot dragging, aches and pains tightened and I slowed to a crawl, formal diagnosis July 2011. On ropinrole 3mg times 3 a day now, cluster headaches still continuing.

Sorry about speech first time I have ever done this, thank you both for your time.

#5
My strong and brilliant Dad has just been diagnosed aged 64 after 3 years of symptoms and a year of misdiagnosis and misplaced hope. We are all struggling to come to terms with this and feel very lost and hopeless. He was started on madopar intially but this had no effect so the GP told him to stop. Neurologist is now planning to start him on a 'dopamine agonist'. Has anyone else gone down a similar route and can you give us something positive to cling on to?:cry:

#6
Hi Kim
You have not said your dad`s symptom`s so I can only say after treatment for a frozen shoulder including steroid injections, ct scan for possible TIA then my diagnosis of Parkinsons, this over a period of 3 years I am glad I finally received a conclusion something I could deal with upsetting though it was. Look after your dad show him your love but if sees you and your family are upset then he will be upset which will cause him upset and stress not good for his Parkinsons. Good Luck

#7
Thanks for your reply. Sorry if I sounded negative but as I said, its early days and we are all still coming to terms with things. As you say, at least we have a diagnosis and there are treatments available, it's just not what he had planned!!
Thanks again