tag:blogger.com,1999:blog-6853744645031857533.comments2023-03-30T10:31:45.935-05:00A day in the life of HCAnonymoushttp://www.blogger.com/profile/04914907928383970059noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-6853744645031857533.post-17261890478219074382013-03-03T23:13:57.514-06:002013-03-03T23:13:57.514-06:00Melanie, I am so very sorry I just now read your c...Melanie, I am so very sorry I just now read your comment. I have neglected my blog for quite a few months. I am emailing you but just in case you are following the blog, feel free to contact me anytime. Again, I am really sorry I am just now reading your message. <br />Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-2475843824710027272013-01-04T14:31:28.024-06:002013-01-04T14:31:28.024-06:00Tara, I just found your blog today and would love ...Tara, I just found your blog today and would love to chat with you about your experiences. I have been diagnosed with occipital neuralgia/Chronic Daily Migraines. I am from Alabama as well. I went to UAB yesterday to be told there is nothing else they can do for me except send to a pain management clinic. I am extremely interested in the ONS. Is there a way I can contact you to ask you some questions about how you found a doctor who would do it and what all you had to go through to have it done? You can also contact me at Troxtel@hotmail.com I look forward to hearing from you!Melanienoreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-55327826511728417152012-10-08T19:26:40.874-05:002012-10-08T19:26:40.874-05:00Tara, so glad it is working for you too!!! That i...Tara, so glad it is working for you too!!! That is 4 of us that I know of positively getting better!!! I was told it took 6 weeks to scar in so I was extremely careful not to pull on my wires for the 6 weeks. I have never had to have mine redone (yet I guess I should say). It got better every day for the first 3 months, then leveled out and i had a burst of improvement at around 6 months, and by the time a year had passed I had all kinds of coverage that my measly 4 leads in the back of my head were not supposed to do!!!. The worst part were the trocar tunnels and healing those up. So very glad Tara!!! I always worry that someone might have a very negative experience when I am saying it really really works...WinnyNinny PooPoohttps://www.blogger.com/profile/13237156887425609665noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-68351528625054744242012-09-30T22:43:07.367-05:002012-09-30T22:43:07.367-05:00WooHoo Tara!! Hoping this will help you as much as...WooHoo Tara!! Hoping this will help you as much as it has helped me!! Also people with even migraines cannot comprehend the difference in pain, especially when it does not go away EVER!!! I had to travel and had a great deal of fear having this happen on a plane becuase I lose control. My PCP gave me injectible phenergan and I injected it right before the flight so I was out of it. Still had it happen, just never at top pain intensity. Understand the fear!WinnyNinny PooPoohttps://www.blogger.com/profile/13237156887425609665noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-77042016857822745242012-08-16T08:52:27.431-05:002012-08-16T08:52:27.431-05:00 I am so thankful that all your hard work and pers... I am so thankful that all your hard work and persistence paid off, I know it has been such a very long, extremely painful journey. I love you so much, and I know that all the people who are searching for help online appreciate your chronicling your struggle to beat this. elissagthttps://www.blogger.com/profile/08524134923821566690noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-37722408581467874942012-08-16T08:46:06.307-05:002012-08-16T08:46:06.307-05:00Oww! I see what you mean about the incision pain ...Oww! I see what you mean about the incision pain :( Well, I bless those beautiful wires if they take your pain away! elissagthttps://www.blogger.com/profile/08524134923821566690noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-6350447285573699182012-04-18T08:56:01.053-05:002012-04-18T08:56:01.053-05:00Thank you. Unfortunately I got desperate and took...Thank you. Unfortunately I got desperate and took ibuprofen a couple times for the headache a few days before and that all seems to be the beginning of the whole combination of symptoms that always leaves me and the doctors guessing whether or not I have Crohn's disease.Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-73618762519188557222012-04-16T11:11:38.152-05:002012-04-16T11:11:38.152-05:00I am praying for this to go through quickly! Hopi...I am praying for this to go through quickly! Hoping that they will do the right thing.elissagthttps://www.blogger.com/profile/08524134923821566690noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-82255633997439032052012-04-16T11:08:53.265-05:002012-04-16T11:08:53.265-05:00Hope you are feeling much better - Love you!Hope you are feeling much better - Love you!elissagthttps://www.blogger.com/profile/08524134923821566690noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-4010792507341857142012-03-14T01:06:31.989-05:002012-03-14T01:06:31.989-05:00I'm sorry about your denial. I hope that you c...I'm sorry about your denial. I hope that you can appeal or reapply under another code. *hugs*Ms. Jhttps://www.blogger.com/profile/08829670451087354896noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-67004909793775116412012-02-28T17:05:51.429-06:002012-02-28T17:05:51.429-06:00Thank you!Thank you!Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-32327001833933067102012-02-28T16:18:29.219-06:002012-02-28T16:18:29.219-06:00I really hope you get approved soon!I really hope you get approved soon!Ms. Jhttps://www.blogger.com/profile/08829670451087354896noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-50523422664569365912012-02-28T16:16:51.957-06:002012-02-28T16:16:51.957-06:00They can definitely miss on an injection. Each doc...They can definitely miss on an injection. Each doctor I've seen has a different technique & hits different spots, so he might just need to vary up the points he hits along the occipital nerve. As for your temple area, I have that same pain and it's due to the auriculotemporal nerve, which is a branch off the maxillary branch of the trigeminal nerve. I never got a block there, but it's definitely possible. Also, it always took the blocks 1-2 weeks to take effect for me. I'm not sure how you're feeling now, but hopefully you have the same delayed effect. I really hope you can get some relief soon. *hugs*Ms. Jhttps://www.blogger.com/profile/08829670451087354896noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-17194839022971322372012-02-22T22:50:21.203-06:002012-02-22T22:50:21.203-06:00Mary, my heart goes out to you. I am so sorry for...Mary, my heart goes out to you. I am so sorry for your loss. Thank you so much for taking the time to read my blog.Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-27155227430722743832012-02-22T12:12:13.792-06:002012-02-22T12:12:13.792-06:00Thank you for sharing your story in honor of Rare ...Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. As you know personally, it is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.orgMary at LaL Solacehttps://www.blogger.com/profile/11796564520009879707noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-59579912293918631552012-02-20T10:35:56.537-06:002012-02-20T10:35:56.537-06:00Thanks for the advice! I am going to ask about th...Thanks for the advice! I am going to ask about that one when I go back. I don't know if they do those or not, though the guy that does the procedures claims he can block basically anything. After looking into it more, with the area that they guy numbed, I think he thought I was talking about the maxillary sinus.Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-8358954050336596082012-02-19T03:19:12.683-06:002012-02-19T03:19:12.683-06:00And it sounds like a Auriculotemporal nerve block ...And it sounds like a Auriculotemporal nerve block might be beneficial to you...if you haven't already tried that.Anarchamyhttps://www.blogger.com/profile/03251677194066443372noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-64252325375918701232012-02-19T03:13:07.107-06:002012-02-19T03:13:07.107-06:00From what I understand, if they don't work and...From what I understand, if they don't work and they have in the past, it is typically placement of the injection being slightly off and not immunity. Sorry to hear it wasn't as effective as it could have been. I hope your headache doesn't stay angry at you for too long.Anarchamyhttps://www.blogger.com/profile/03251677194066443372noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-89085888481354550582012-02-03T11:51:03.774-06:002012-02-03T11:51:03.774-06:00WooHoo!!!! Hoping it is a productive and as pain ...WooHoo!!!! Hoping it is a productive and as pain free trip as possible!!!!WinnyNinny PooPoohttps://www.blogger.com/profile/13237156887425609665noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-1403018562164891942012-01-31T14:34:09.879-06:002012-01-31T14:34:09.879-06:00Thank you so much! I am keeping mine crossed for ...Thank you so much! I am keeping mine crossed for you that your trial goes great. You only have a few days to wait now!Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-46370745591264733082012-01-31T14:17:01.074-06:002012-01-31T14:17:01.074-06:00Keeping my fingers crossed for you!Keeping my fingers crossed for you!Anarchamyhttps://www.blogger.com/profile/03251677194066443372noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-1983908327105344592012-01-20T11:06:46.282-06:002012-01-20T11:06:46.282-06:00No I never have had a spinal tap. No doctor has e...No I never have had a spinal tap. No doctor has ever said anything about doing one, ever. What started the whole thing was years ago my eye doctor thought that my optic nerve or disc - which one is it? - looked swollen but the neuro said it wasn't. Insurance won't pay for the stimulator but I have a new neuro now that says he can help get it approved or else I can hope to get it through a clinical trial, which I am on a waiting list for. The problem is I am afraid maybe I won't meet the criteria or maybe get the sham procedure done. It's just more waiting and waiting and waiting.... I'm glad you are still doing so much better with the stim. Hope it continues to be great for you!Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-6219235454196092822012-01-19T19:47:16.630-06:002012-01-19T19:47:16.630-06:00I was diagnosed with Pseudotumor Cerbri (Intracran...I was diagnosed with Pseudotumor Cerbri (Intracranial Hypertension) in '07, 3 years before I was diagnosed with Hemicrania Continua. I have often wondered if the IH caused the HC. Unfortunately for me my IH got real bad real fast (causing blindness within 2 months of symptom onset, and it took them 2.5 months to diagnose me). So I ended up with a VP Shunt instead of taking the Diamox. Did you ever get a spinal tap? That is the only way I know to diagnose IH. They really aren't that bad, mostly because if you do have IH your headache will disappear for a few days since the pressure was relieved by the tap. On the flip side, it can make you dizzy and if they over tap you (take too much fluid) it can cause headaches. <br />If your insurance company pays for the stimulator, get it. I love it and don't regret the surgery one bit.Nutmeg04https://www.blogger.com/profile/17589205769884773878noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-60200962985444937582012-01-17T22:29:16.781-06:002012-01-17T22:29:16.781-06:00Yes it was probably the light or the walk, or the ...Yes it was probably the light or the walk, or the combination. Both of those wreak havoc on my head. I was just so happy to feel better I stepped out to enjoy the day for a while hoping that would not happen. So even with the stim you still have the stabs??? Oh no I am really sorry to hear that.Anonymoushttps://www.blogger.com/profile/04914907928383970059noreply@blogger.comtag:blogger.com,1999:blog-6853744645031857533.post-23068239475119093902012-01-07T13:12:26.954-06:002012-01-07T13:12:26.954-06:00Tara, I always tell medical people that I wouldn&#...Tara, I always tell medical people that I wouldn't wish this on my worst enemy.<br /><br />Mine runs in a 3-4 day cycle with intermittant ice picks of pain...still goes on with the ONS, but less so. Once a month totally out of hand no matter what.<br /><br />Maybe the light triggered it or the walk?? I never could find a 'trigger' for me other than exercise of any sort. Walking or running a vacuum - any type of physical activity makes mine worse. It seems to be a common characteristic of the disease.<br /><br />The ice pick stabs I get in bunches are no fun either. I am told there is no help for me on that since I can't do indomethacin. Hoping your injection helps a great deal!!WinnyNinny PooPoohttps://www.blogger.com/profile/13237156887425609665noreply@blogger.com