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Cluster Headache Help and Support >> Getting to Know Ya >> Hi am Pinogranny http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1289242668 Message started by pinogranny on Nov 8th, 2010 at 1:57pm |
Title: Hi am Pinogranny Post by pinogranny on Nov 8th, 2010 at 1:57pm
I sure don't know if this is how to start a new thread but I will give it a try. At the age of 59 In June I started with CH. Having suffered with a few migraines in the past, my doc gave me the usual meds for migraines. My dear husband sent her an email 2 weeks into the headaches and told her my symptoms and she called him right away to say that I was having CH. She put me on topamax ( I slowly went to 6 pills a day) and imitrex, then maxalt. She referred me to a neuro who was most impressed that she gave a correct diagnoses. I had about 10 weeks of horrible headaches. My husband is a retired police chief and I told him early into the headaches to hide all guns. I was desperate. The neuro changed my meds to verapamil and imitex injections. I still use maxalt trying to get rid of the shadows. We really didn't like the neuro at all and my husband wants me to go back to the family doc who is just a gem. I am fearful that my CH are chronic because of the age of onset. I hope someone will tell me I probably am wrong!!. I asked the neuro to send a script for the oxygen today. Not sure how long that will take. My shadows have increase in pain since I had a filling replaced last week. Not sure if that has anything to do with it or not. Shoot, since June I am not sure of anything except my head hurts and I cry at a drop of a pin. My shadows seem never to go away. Always one sided. Well to my new friends, I hope someone can make sense out of my ramblings and offer some ideas. Oh yeah. Once during the summer I had to go to the hospital because the headache was lasting forever......don't know what they gave me...........I could feel the pain, but I really didn't care. It just felt good not to scream,walk/run and want to bang my head on something.
Wishing a good nights sleep to all, Pinogranny ( I play pinochle on line, hence the name) |
Title: Re: Hi am Pinogranny Post by Agostino Leyre on Nov 8th, 2010 at 3:02pm
Well I for one and glad that you clarified your screen name, I thought you were a gandma who liked to drink wine.
No being serious, hopefully you will get the O2 soon, I am not a fan of triptans (imitrex et al) as they can cause rebounds and extend the length of cycles. Wishing you luck and please read as much as you can, there is a lot of info from some rather intelligent people and always a shoulder to lean on when you need it. |
Title: Re: Hi am Pinogranny Post by Lauren17 on Nov 8th, 2010 at 3:28pm
Hello again Pinogranny! Have you tried the energy drinks with taurine (like Red Bull)? It really did help with the persistant shadows my husband was having during his cycles.
Keep us posted on the O2, it worked wonders for my husband, and Melatonin helped for the night hits. And Bob, it sure looked like she got an official diagnosis to me already, but I concur about staying with a headache specialist. Keep us posted, we're all pulling for you! |
Title: Re: Hi am Pinogranny Post by pinogranny on Nov 8th, 2010 at 3:57pm
Thanks so much for responding folks. I did have a complete workup with blood work and a MRI. Our complaint with the neuro ( who is a headache specialist) is that he gave us almost no information. He told me the meds to take which was also a round of prednisone which I forgot to mention. What we know about CH is from our own research. Thank God I found this site. He told us nothing about the condition, just what to take. He didn't want a follow up visit or phone call. I am left with the feeling........."Now what" I am going to buy red bull today and say bullsh_t to my shadow, I hope. I have tears right now because I feel not so alone with the pain and not knowing. I do have a wonderful husband who has been better than terrific though this ordeal. In turn I feel very sorry for him to see me in such pain. To love someone as much as loves me and have a feeling of not being able to help I am sure is horrible. Thanks again
Pinogranny.....not winogranny........lol |
Title: Re: Hi am Pinogranny Post by Lauren17 on Nov 8th, 2010 at 4:42pm
He can help you, and will feel better for it to be able to. Please send him here if he would like and he can ask his own questions. I am a supporter and I get great comfort knowing I am doing something, everyday, to lessen my husband's suffering.
You are both on a team in this; sometimes you will be the captain of the team, and sometimes he'll have to take over while all your energy is tied up in surviving the hits. He wants to help and he can make a difference. Send him to us and we'll show him how! So glad you're here! |
Title: Re: Hi am Pinogranny Post by Mike NZ on Nov 8th, 2010 at 4:48pm
Hi Pinogranny
You're not alone. It seems that many doctors are happy to put a label on something, write a prescription and move on to the next patient. Here you'll find an amazing place to learn more about CHs and how to deal with them than probably what 95% of doctors know. When you get oxygen you'll find it's absolutely amazing in how well it works. Just make sure you read the oxygen info on the left and you're using a non-rebreather mask (with a bag) plus a high flow rate (15lpm or higher). The prednisione will have been to act as a short term preventive whilst your main preventive builds up which with verapamil is typically about 10 days. With the verapamil many of us use pretty high doses compared to what people use for treating high blood pressure, so you may need to discuss how effective it is with your doctor. And get your husband to look at the forums too. There are supporters here who know just what it's like to look after someone with CHs. I'd also read and read and read some more. There is so much to learn from the experiences of others here. Then ask questions as I'm sure you'll have plenty. |
Title: Re: Hi am Pinogranny Post by Linda_Howell on Nov 8th, 2010 at 4:54pm Quote:
A doctor who would diagnose you over the phone based on what your husband told her, is Um....VERY unusual. I'm glad that the Neuro gave you a work-up & a firm diagnosis later though. At least you know what you're dealing with now. Ten weeks of a cycle does NOT..repeat NOT mean you are chronic. It sounds like this Neuro, however doesn't have much of a bedside manner if he didn't give you any information. This site right here can take care of that. Read the links to the left, read posts from others in this section and on the other two as well til you really get a feel with what this condition entails. We're all here to answer any questions. Linda |
Title: Re: Hi am Pinogranny Post by Chris H on Nov 8th, 2010 at 5:57pm
Hi Pino Lady, Nice to have you here. This board is a great place to ask questions, get info, and share your own knowledge. It's also full of some really nice people willing to help.
Why don't you just go to another neuro or a headache center for that matter? This will likely be a long term relationship, so better to work with someone you like and especially who shares info with you. I've found that headache specialists move much more quickly toward addressing the pain than others. -Chris |
Title: Re: Hi am Pinogranny Post by AussieBrian on Nov 8th, 2010 at 6:27pm
Mind you, Winogranny has a nice ring to it, too. Either way, tell hubby if he's not sure about posting here he's still welcome to PM any one of us, under his own screen-name or yours, and we'll happily help him every inch of the way.
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Title: Re: Hi am Pinogranny Post by Ginger S. on Nov 8th, 2010 at 8:04pm
Welcome aboard Pinogranny!
Sounds like you are on your way to feeling a bit better. I Hope you stay on that path. If your neuro actually prescribes the O2 he/she can't be all bad even if the bedside manner sucks. Consider yourself lucky. Don't hesitate to change neuro's though if you feel the need, we need proper support from our Doc's as well as family. Give your hubby an extra hug or two for being such a great supporter they are VERY IMPORTANT to us CH sufferers. Best Wishes for More Pain Free days and nights! |
Title: Re: Hi am Pinogranny Post by Agostino Leyre on Nov 9th, 2010 at 3:13pm pinogranny wrote on Nov 8th, 2010 at 3:57pm:
I was thinking more along the lines of like Pinot Grigio or Pinot Noir. lol. |
Title: Re: Hi am Pinogranny Post by Guiseppi on Nov 9th, 2010 at 4:38pm Agostino Leyre wrote on Nov 9th, 2010 at 3:13pm:
I do like how your mind works Thomas!!! ;D Joe |
Title: Re: Hi am Pinogranny Post by Agostino Leyre on Nov 9th, 2010 at 9:42pm Guiseppi wrote on Nov 9th, 2010 at 4:38pm:
I wasn't actually aware that it (my mind) was still working. Thanks for letting me know it is. :D |
Title: Re: Hi am Pinogranny Post by pinogranny on Nov 11th, 2010 at 6:09pm
Oxygen coming tomorrow. Crossing my fingers, toes and eyes.
P[W]inogranny |
Title: Re: Hi am Pinogranny Post by Mike NZ on Nov 11th, 2010 at 11:44pm pinogranny wrote on Nov 11th, 2010 at 6:09pm:
You'll love it and what it can do. I bet you're even wanting a CH just so you can see just how good oxygen is too (I know I did). |
Title: Re: Hi am Pinogranny Post by Agostino Leyre on Nov 12th, 2010 at 7:15am pinogranny wrote on Nov 11th, 2010 at 6:09pm:
Did you get it yet? Please let us know how it works out for you and if you have any questions. |
Title: Re: Hi am Pinogranny Post by Guiseppi on Nov 12th, 2010 at 8:55am
Yes, please let us know how it works and if you have any questions at all! Crossing fingers for you.
Joe |
Title: Re: Hi am Pinogranny Post by pinogranny on Nov 22nd, 2010 at 4:07pm
I have had my oxygen for about 2 weeks now. I set it on 15 for 15 minutes. That usually takes care of the shadows, but they do come back. Is that typical? Thank God I don't deal with the beast right now. I said we are unhappy with my neuro and 2 unreturned phone calls have convinced us we need a new route. At present we are trying to set an appointment at the Cleveland Clinic. My husband is going to Las Vegas for a conference and then planned on spending additional days there thinking I would be with him and he knows how I love to lose his hard earned money. I am scared to fly because I have been told the different pressures within the plane could cause additional problems for me. Anyone willing to share their experiences with flying while having shadows? I only have 9 days to make up my mind. One of my ?'s to the neuro is about my calan. I am on 180 MG once a day and I wanted to ask him if I should increase the dosage. I left a message and no return call. It is so frustrating. Well to all of my new found friends....happy Turkey Day. Pinogranny
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Title: Re: Hi am Pinogranny Post by Chris H on Nov 27th, 2010 at 8:21am
Hi Pino, I'm sorry to say that flying really bothers me. I get intense periods of attacks and for that reason, have not flown for over 8 months. I may be an exception though, because others here seem to have no problem. There are two possible triggers associated with flying: changes in ambient pressure and changes in O2 levels. Another trigger for me is change in altitude even when not flying. The last time I went skiing, I got hit as soon as we got up the mountain.
Glad to see that you're heading to the Cleveland Clinic. I've been to the headache center there and thought they were amazing. -Chris |
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