I'm Back!!

[georgia girl 35]

Hello everyone! Hopefully some of ya'll remember me. I've been MIA for a while now and I decided it's time to come clean.

I was banded 9-20-07. Lost 100 lbs exactly on my 1-year bandiversary. I have flip flopped with the same 20 lbs since then.

I have been pretty active on LBT until the past few months. I was recently diagnosed with cluster headaches. It's a very rare headache disorder- known as the worst kind of headache there is. Here is a link that better explains if anyone is interested in it --> Cluster Headaches

I have been dealing with these headaches for a little over a month now, with anywhere between 1-6 headaches a day. My doctor put me on a steroid, a very high dose and then I'll be tapered off it. I think I will be on it a total of 6 weeks. The side effects are taking a toll on me....even less sleep, mood swings, fatigue, and HUNGRY ALL THE TIME! I think I've gained 8 lbs since starting the steroid 10 days ago. The steroid blocked the headaches for about 4 days, and now they have returned again.

I have tried exercising since the attacks started and exercise ALWAYS brings an attack on...even light swimming. It's very discouraging. I am lucky that my doctor knew about cluster headaches, because many people go misdiagnosed for years...it's heartbreaking.

Now, I am not blaming cluster headaches for all my weight gain, because I have not been following the rules much lately. food has become my comfort. I never thought that would happen to me after all I have accomplished. I guess I'm just looking for some support. I still have a long way to go and I'm wondering if I will ever get there.

I am going to start tracking my food tomorrow and try to make better choices with my food. Thanks for listening. I've missed my band buddies!!

[gone 4 ever 6]

GG... I am so sorry your going thru this. There is another woman on the PJTP thread, Heartfire is her name and she has clusters. My DD has severe migrains from he Meniers. I feel for you. Especially being hungry from the steriods. I was recently put on them for a short time and gain 6 lbs. I wish you the best of luck. I will pray for you. Please keep posting.

[luluc 6]

oh georgia girl - sorry about the headaches , but glad your back!!!! you've been missed!

[SuzanneG 1]

Georgia, so sorry about the headaches, I can't imagine. I know how difficult it is to be on steriods too. Hopefully you can wean off of them effectively.

I've been off track lately too and I'm going to try and get back on track myself. You might have read on the C25K thread, but I've had surgery on my foot and the nerve isn't healing right. Lots of nerve pain and I haven't been able to run, it's killing me. I may have to have surgery on it again, so I decided that I best get my eating under control first or I'll start to gain weight.

I'll join you, let's get back on this wagon and make it work for us!

[georgia girl 35]

GG... I am so sorry your going thru this. There is another woman on the PJTP thread, Heartfire is her name and she has clusters. My DD has severe migrains from he Meniers. I feel for you. Especially being hungry from the steriods. I was recently put on them for a short time and gain 6 lbs. I wish you the best of luck. I will pray for you. Please keep posting.

Thanks gone 4 ever. I really appreciate the prayers. Hopefully we will find a medication that will end my cycle. Thanks again!

oh georgia girl - sorry about the headaches , but glad your back!!!! you've been missed!

Thanks luluc! I've missed you too!

Georgia, so sorry about the headaches, I can't imagine. I know how difficult it is to be on steriods too. Hopefully you can wean off of them effectively.

I've been off track lately too and I'm going to try and get back on track myself. You might have read on the C25K thread, but I've had surgery on my foot and the nerve isn't healing right. Lots of nerve pain and I haven't been able to run, it's killing me. I may have to have surgery on it again, so I decided that I best get my eating under control first or I'll start to gain weight.

I'll join you, let's get back on this wagon and make it work for us!

Hey Suzanne! I haven't had a chance to read all the c25k posts. I skimmed through and saw a lot of new people. I am sorry your foot is not healing right. I know what you mean about running. I miss it soooo much! I hope we can both get better so we can run again! I have really missed the support I get from all my running buddies! Here's to a great day!

[mich 74]

I am so sorry to hear your news! My mom started suffering from cluster Migraines in 1996. It can be totally debilitating. They have tapered off over the years and she now has mild cycles with long time spans in between, and is on no meds.

The drugs are hard. She was on everything from steroids to depakote to lithium. One thing that she was surprised that worked so well was some kind of vibrating head band that my dad found and ordered online. She still takes it with her whenever she travels.

Be gentle with yourself, this is a very hard illness.

[heartfire 4]

Georgia Girl, I do remember you and am so glad you're back. I'm so sorry that you are in so much pain and having such a hard time!

What I have are standard Migraines but I "cluster" for a few days each month with them so I don't actually have cluster headaches like what you have. I'm on Maxalt.

Prayers that the doctors can get you on a regime of meds that can help relieve things for you.

Keep posting, you've been missed!

[georgia girl 35]

I am so sorry to hear your news! My mom started suffering from cluster Migraines in 1996. It can be totally debilitating. They have tapered off over the years and she now has mild cycles with long time spans in between, and is on no meds.

The drugs are hard. She was on everything from steroids to depakote to lithium. One thing that she was surprised that worked so well was some kind of vibrating head band that my dad found and ordered online. She still takes it with her whenever she travels.

Be gentle with yourself, this is a very hard illness.

Hi mich! Thanks for sharing that. It is a really bad illness that I didn't even know existed. I have heard that lithium works well for many and also a drug called verapamil, which is a blood pressure medicine, I think. Hopefully the Prednisone will break my cycle. If not, it's on to a different med.

Did your mom every try high flow oxygen therapy? I hear it works really well in aborting the headaches. My insurance has approved for me to get it, just waiting on the healthcare supply company.

I'm interested in knowing about the vibrating head band. Could you find out what it's called and let me know. I'll try just about anything.

Georgia Girl, I do remember you and am so glad you're back. I'm so sorry that you are in so much pain and having such a hard time!

What I have are standard migraines but I "cluster" for a few days each month with them so I don't actually have cluster headaches like what you have. I'm on Maxalt.

Prayers that the doctors can get you on a regime of meds that can help relieve things for you.

Keep posting, you've been missed!

Hey heartfire! Thanks for the welcome back and prayers! Sorry about your migraines. I hope your med is working well for you. I will definitely keep posting...good to hear from you!

[mich 74]

I was doing a lot of research and had encouraged her to do the oxygen. I think she said she had it a few times when she went to the ER because the pain was unbearable. For some reason she did not want to get a tank for home. Maybe she was not impressed with the times she had it at the hospital, maybe she was nervous about a tank at home. But I do wish she would have tried it at home. I read about lots of success with it.

I will find out what the headband is and let you know. They are traveling now so it may take me a few days.

Take care.

[georgia girl 35]

I was doing a lot of research and had encouraged her to do the oxygen. I think she said she had it a few times when she went to the ER because the pain was unbearable. For some reason she did not want to get a tank for home. Maybe she was not impressed with the times she had it at the hospital, maybe she was nervous about a tank at home. But I do wish she would have tried it at home. I read about lots of success with it.

I will find out what the headband is and let you know. They are traveling now so it may take me a few days.

Take care.

Thank you mich! I really appreciate that. She may not have had success with the oxygen at the hospital if the flow rate wasn't high enough. It needs to be a minimum flow rate of 15 lpm. I've read that 25 lpm works the best, but most doctors start prescribing at 15. If she starts having them again, I'd say it would be worth a try. I'd much rather use the oxygen as an abort, rather than the imitrex shots.

Thanks again for the reply! Hope your mom stays pain free for a looonnngg time!

[mich 74]

Hi Georgia Girl, hope you are doing well. I spoke with my mom, she said the headband broke a while back, she can't remember the name of it, but it was around $70 online. But she found that those hand held back massage things work the same. They kind of look like a bug with 4 legs and they vibrate? She holds it to wherever the pain is, top of head, behind ears.

She also suggested lots of Omega 3 supplements. She feels it has helped keep the brain inflammation down.

Thanks for the flow rate info, I will be sure to remember that. I remember being so worried about the imitrex shots. She would take another shot early and her doctor kept saying how dangerous it is if you take them too close together. That was why I kept pushing her to try the oxygen. I hope it works for you!

My parents actually retired to New Mexico 4 years ago and I think that has been a huge help for her. The steady dessert air pressure, compared to constant changing barometric pressure in MA.

[Gone4Now 4]

Welcome back, GG!!!!

[georgia girl 35]

Welcome back, GG!!!! :laugh:

Thanks Gloucester!

Hi Georgia Girl, hope you are doing well. I spoke with my mom, she said the headband broke a while back, she can't remember the name of it, but it was around $70 online. But she found that those hand held back massage things work the same. They kind of look like a bug with 4 legs and they vibrate? She holds it to wherever the pain is, top of head, behind ears.

She also suggested lots of Omega 3 supplements. She feels it has helped keep the brain inflammation down.

Thanks for the flow rate info, I will be sure to remember that. I remember being so worried about the imitrex shots. She would take another shot early and her doctor kept saying how dangerous it is if you take them too close together. That was why I kept pushing her to try the oxygen. I hope it works for you!

My parents actually retired to New Mexico 4 years ago and I think that has been a huge help for her. The steady dessert air pressure, compared to constant changing barometric pressure in MA.

Hey mich! Thanks for the info. I think I have one of those vibrating back massagers somewhere...I'll have to try to find it. I'll check into the Omega 3 supplements too. I have read that some people believe the climate changes has A LOT to do with it. I'm glad to hear that she doesn't have to deal with them as much anymore.

My oxygen was delivered yesterday and I'm sooooo glad I have it. I haven't had to use it yet. I haven't had a headache in few days now and the break has been WONDERFUL! I will report back and let you know how the oxygen works though. I hope it works as good as everyone says it does.

I am sooooo ready to get off this steroid though....I'm blowing up like a balloon!! The hunger is driving me absolutely crazy! I thought my doc was exaggerating when he said it would make me hungry.....NOPE!

Thanks again for all the info! I really appreciate it!

[krtork 0]

GG~ Sorry to hear about the cluster headaches - that is no fun at all. I never had cluster headaches but had horrible Migraines for years - so I can empathize with your pain! I hope the oxygen helps, it is nice to see you're open to different ideas and ways to help your pain - everybody responds to different methods!

Good to have you back - keep us posted on how you are doing! Miss you on the C25K thread!

[georgia girl 35]

GG~ Sorry to hear about the cluster headaches - that is no fun at all. I never had cluster headaches but had horrible Migraines for years - so I can empathize with your pain! I hope the oxygen helps, it is nice to see you're open to different ideas and ways to help your pain - everybody responds to different methods!

Good to have you back - keep us posted on how you are doing! Miss you on the C25K thread!

Thanks Kristen! I miss ya'll too! I've been peaking in from time to time, checking on ya'll. As soon as I think my cycle is over, I'm going to start back running again and see what happens. I'll probably start the c25k over from the beginning since I haven't ran in a couple of months.