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Cluster Headache Help and Support >> Getting to Know Ya >> Just diagnosed 8 months ago... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1332428379 Message started by JessieD on Mar 22nd, 2012 at 10:59am |
Title: Just diagnosed 8 months ago... Post by JessieD on Mar 22nd, 2012 at 10:59am
Hi all... I was just diagnosed with Clusters 8 months ago by a headache specialist here in Dayton. Thank goodness my General Practitioner knew he didn't know enough to help me. :)
I am 36, married with two kids. I have always suffered from sinus and tension headaches and have always had chronic allergy issues. So as my headaches got worse as I got older, I just wrote them off as my sinuses acting up more. Then the migraines started (about 6 years ago) and I knew this wasn't just the sinuses anymore. Then.... then.... the excruciating, debilitating Clusters began (about 18 months ago). I had done a bit of research myself online about various types of headaches and Clusters seemed to fit a little better than anything else. So now, after 8 months of treatment, I have a diagnosis of 'Chronic paroxysmal hemicranial clusters in a migraine pattern'. My doctor calls me his "Little one-in-a-million". (I guess I should be pleased?) My headaches come in a migraine pattern and typically follow my estrogen levels which scream migraines BUT they are hemicranial with ice-pick to the eyeball pain, my nose clogs up, my left eye droops, and the only way I get any semblance of relief is to go for a run. I can't lie down. I can't close the blinds. Silence does nothing more for me than not. I have pulled clumps of my hair out. I have scraped my forehead against our living room carpet (giving myself rug burns... it was attractive) to attempt to get rid of the pain. My headaches also come on at a level 10 and always wake me out of my sleep between 1-3am. Then, over the course of the next few days, they will hit me every few hours and decrease in intensity. Typically my patterns last for 3-4 days. This all happens twice per month... estrogen up and estrogen down. I am taking Indomethacin on a daily basis - anywhere between 2 and 4 pills per 24hrs. I also am on Imitrex injections as well and had to use one just last night. I'm here for support and understanding most of all. My husband has NEVER had a headache to speak of and doesn't suffer from any allergies. I made him go with me to my first specialist appointment so he could see that I wasn't crazy. I think he is starting to understand as he did stay up and walk around the house with me during my episode last night and did ask if I needed another injection this morning. So maybe I'm making progress. Although I'd rather never get a headache again than teach him how to understand them. :) |
Title: Re: Just diagnosed 8 months ago... Post by JessieD on Mar 22nd, 2012 at 1:13pm
Hi Bob - thanks for responding. I am actually working with a headache specialist now and have been for the 8 months.
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Title: Re: Just diagnosed 8 months ago... Post by Jeannie on Mar 22nd, 2012 at 1:24pm
Hi Jessie,
Sounds like you've got a lot going on. Has your Dr. mentioned oxygen? I can abort a CH in sometimes 5 minutes using a high flow rate and my Optimask. |
Title: Re: Just diagnosed 8 months ago... Post by Alex Gingell on Mar 22nd, 2012 at 2:34pm
Have you tried water? Simply tap water and lots of it for a sustained period. I suffered for 14 years and it was hell!! Now clear for nearly 6 years because of water. Drink drink drink 6ltrs a day for a week, then 3ltrs a day. My life has now changed hugely with 3 businesses and 5 kids - loving every minute of it now. I'm 40 yo now. Believe me I tried ergotamine, steroids, verapamil, Oxygen even cold baths and saunas, but nothing worked - just tap water! Chin up and you WILL get through this.
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Title: Re: Just diagnosed 8 months ago... Post by Alex Gingell on Mar 22nd, 2012 at 2:39pm
...and it was Dr Blau who I was under for 8 years (the guy who wrote the piece on verapamil). He died a few years back and Anne McGreggor has filled his shoes. I have spoken with her at length and she recommended I come on these sites to try and help people.
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Title: Re: Just diagnosed 8 months ago... Post by JessieD on Mar 22nd, 2012 at 3:24pm
Thanks Jeanne - yes, my doc did mention O2 at one point but figured that if the Indo and Imitrex injections were working, then let's go with that for a while. BUT now with last night's episode, I'm thinking I'll be revisiting that with him at my appointment next week.
Water, water, water! I did just read one members post about water here a few hours ago. I drink a lot as it is but I am definitely going to try to up that even more. |
Title: Re: Just diagnosed 8 months ago... Post by RichardN on Mar 27th, 2012 at 6:02am
Hi Jessie and Welcome
I came here 2/02, after 13 months of tests, non-working meds, having 6-8 attacks daily, sometimes 3-5 at night, Kip 5-9, most 20-45 min and the occasional 1 1/2 - 2 hr+ horror. After my wife found this site for me, I copied pages of info and took to my doc and finally got started having some control of this beast of ours. Initially I started on Verapamil (as preventive) and Oxygen as abortive . . . the 02 is a miracle for most of us and if used at the onset of attack at the proper flow rate and proper mask was able to avoid many a "dance". Water therapy (see "water X3" . . . link on left). Post surgery and prior to chemo 5/04, I stopped taking the Verapamil. My attacks had reduced in frequency/intensity to a level I could control with the 02 . . .rarely going above Kip 5 (unless I was delayed getting to my tank/mask). Finally accepted it was the water I was required to consume to prevent UTIs (have had several) . . . IT IS NOT EASY TO DO . . . and if I slacked-up on water intake drastically, would get slammed with a series of nasty attacks. After dealing with the beast for eleven years, I have now been painfree for 4 1/2 months due to the D3 regimen . . . definitely worth a try. Glad you found us . . . keep reading . . . keep asking. Be Safe, PFDANs Richard |
Title: Re: Just diagnosed 8 months ago... Post by JessieD on Mar 27th, 2012 at 1:34pm
Thank you Richard and congratulations on your 4 1/2 months pain-free!
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