Desiree Just Diagnosed July 2012
|Subject: Desiree Just Diagnosed July 2012 Wed Aug 01, 2012 5:05 am|| |
Hi, I was just diagnosed last week on Thursday. I have been dealing with headaches for about 6 years. I have been told I have stress and tension headaches. Because of my pain mostly always being on the left side of my face I was also sent to an oral surgeon who said I was probably clenching my teeth at night..... I just knew that I did not have a migraine or any of the other things that thy have been saying. I feel like I go to the doctor all the time always trying to explain to them that it HURTS everyday. I need to relax they say.... well its very hard to relax when you are going broke and the problem is not solved. I need to work, be a wife and hopefully have kids someday. I cant let pain keep me down. More importantly I HAD to find out what is causing this. Then about a month and a half ago I started hearing a whooshing in my left ear. I waited it out thinking that it would go away, I bought all these drops.... nothing worked, the ENT found nothing, sent me to get a CT... showed nothing, so he thought I should probably get an MRI since my ear was still bothering me. My MRI showed signs of IIH, I had a spinal tap and it was at 29.
Although I am glad to FINALLY know whats causing this I am upset with the fact that I cant get my pain under control, I am always uncomfortable. Between the whooshing and the headache I feel frayed. I do not feel like the same person. I have gained weight, I sleep a lot, I have stayed away from people. Nobody seems to understand, I try to tell my friends and family what I am feeling but most people think that I am just avoiding them, even though I have told them I do not feel good. I was started on Diamox, I know it will take time. They started me on a very low dose and I am to gradually work my way up. I have also been given midrin for the pain.... to take only 2 days out of the week at the onset of a HA, how is that supposed to work when it is literally always there.
|Subject: Re: Desiree Just Diagnosed July 2012 Wed Aug 01, 2012 5:48 am|| |
Hello Desiree and
I also am so glad that you finally have a diagnosis. You have waited long enough for that to happen.
Yes, it will take some time for the Diamox to really get to working. Did your doc forewarn you about possible side effects? The tingling of the hands and feet can be quite an annoyance. Just try thinking about the good the meds will do and ignore the yucky stuff. Your body will eventually get used to them.
Please have a good read about the site. There are many good pamphlets on how to deal with IIH, especially concerning friends and family. Having an "invisible" illness makes it particualy hard for some people to understand. But WE do. We will try to help you along. Just know that you are not alone on this journey.
|Subject: Re: Desiree Just Diagnosed July 2012 Thu Aug 02, 2012 3:08 am|| |
I have found so much helpful facts on this site. Thank you for all your support. Hope I feel better soon. Again, thanks for the support. Feels good knowing I can come on here and ask questions and learn.
|Subject: Re: Desiree Just Diagnosed July 2012 Thu Aug 02, 2012 4:58 pm|| |
Hi Desiree, sorry my welcome is late but I'm glad you found us! Diagnosis and treatment can be so tough, we'll be here to help you through the best we can. Like Linda said there are guides and print outs available with helpful suggestions on how to talk to family and friends about IIH. There have also been members that have taken them to appts, so they can get professional view and ask questions. You can also refer them here or to www.ihrfoundation.org for more info re: IIH.
IIH and treatments seem to affect people differently, so you may want to try the symptom log provided too. Chart your meds and symptoms, so you can have candid discussion w/ physicians..it really helps! You'll find different triggers for IIH and ways to relieve symptoms. I always had a sweet spot somewhere between 45-60 degree angle that relieved some pressure when I layed on my side. I also use heat on the back of my head/neck and down my spine, but cold packs on my eyes. I'm sure you'll find all sorts of tidbits throughout the site. Let us know if you have any questions.
|Subject: Re: Desiree Just Diagnosed July 2012 Thu Aug 02, 2012 7:04 pm|| |
Hello Desiree and a very warm welcome, I'm so pleased you've joined us. I totally agree with the other ladies posts and we will do all we can to help you. Pain relief is more effective if you take it the moment your headache starts rather than when it has a hold, and this has been reiterated by WebMD. It works better when you take it at the very start so if you begin to feel a headache coming on, that's the best time to take your pain relief.
Keep a symptom log and a medication log, which we have both in our Useful Guides and Printouts
these will not only help you keep a record of what is going on, but will help your Doctors when you see them to know exactly what you are experiencing.
Our Group Huddle forum gives you somewhere to ask questions of other members, have a much needed rant or to just say how you are feeling. So please take advantage of it. Our members are all very friendly, supportive and inspirational and willing to listen.
The Admin and Moderators are here if you have any problems, to help and give advice.
|Subject: Re: Desiree Just Diagnosed July 2012 Fri Aug 03, 2012 1:30 am|| |
Welcome to the group! I'm so glad that you found us and I hope that this site will be as great of a resource for info and support as it has been for me.
I remember being where you are now ... having the relief of finally getting a diagnosis and knowing what is really going on with me, balanced with the fear/anger/anxiety/grief of trying to come to terms with and live with this condition. I want to share some hope with you and tell you that for me, things have gotten better since that diagnosis back in November of 2009!
I am on Diamox too, and have done well with it ... I hope that it will be the same for you. *hugs*
|Subject: Re: Desiree Just Diagnosed July 2012 Mon Aug 06, 2012 8:02 pm|| |
Thanks guys for all your support and helpful information! I learn more here than I do from my neurology office...........
|Subject: Re: Desiree Just Diagnosed July 2012 || |
Desiree Just Diagnosed July 2012
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