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Old 01-19-2015, 06:51 PM
 
1 posts, read 731 times
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Quote:
Originally Posted by sapphire-rose View Post
I never thought I'd see others with this illness.
I started with this back in 1985, First symptom was my right eye vision tunneled out. went to the doc, (back in those days they didn't seem to know as much of this illness) When he checked my eyes he saw "papledemia" ... He put me in the hospital right away. I had the severe headaches as well. Always expect if you go to the ER with the severe intense headaches you will get, a C A T scan and a spinal tap. It's a must. I was 147 lbs at the time, In 85 I was discharged from the hospital after 5 days, DR told me they didn't find anything wrong. Put me on diuretics. They made me very sick. I stoped taking them. 1986 Severe headachs and ER again. I went to the Mass. Eye and Ear, in Boston MA. Again was told they didn't find anything, then added "sometimes short women cannot carry the excess weight, get rid of the weight, get rid of the problem." Diuretics again, made me very sick. I got down to about 120 LBS. (if I get to about 135 to 140 I feel it coming back) had some headaches but not as severe. Until 1997, Four in the morning I was woken out of a deep sleep with blinding pain. Back to the ER and third C A T and spinal tap. Luckily I got a good nuerologist who after a few weeks told me what it is. He called it Benign Itercranial Hypertension...also known as psuedo tumor. He mentioned monitoring it with diet, exercise and keep the weight down. The diuretics made me very ill again and he took me off of them. I was told about a shunt from the brain to the stomach if we cannot control this. To this day I have aweful headaches. Every now and again when I get my eyes checked, I am sent to a neuro opthamologist. Just went last month. Yes this can be deadly, yes you can go blind; and you do not want to risk your life or your sight. DO AS YOUR DOCTOR TELLS YOU PLEASE. If one diuretic makes you sick, ask your DR if there is another. DO NOT SKIP DR APPOINTMENTS. Ask for an application for lower slideing scale fee if you cannot afford appointments or meds. ASK if they can give you samples of the meds they want you to take. Some DR's have them and will supply them to you. I was around 28 when this first showed up, I am now 52. Look this up online. Research it, learn as much as you can. It will provide you the knowledge to have conversation with your DR. Write down any questions that you may think of. Always tell future DRs. ER staff or any medical personal you see that you have this condition. Including eye DRS. They see it upon eye exams and need to know that you know you have it. They panic if they see it and are unaware you know of it. They think it could be a BRAIN TUMOR. Take care of yourself and diligently my dear, it's important.

Also please know, when I went to the diet center, one thing they explained that I never thought of. Our bodies are like a barometer. When the weather conditions cause a barometer to rise, the fluids in our body does as well. So that fluid is going up into your brain and you will get headaches. I also found if my clothing is to tight, if there is any kind of pressure across my spine, the pain shoots right up into my head. I do not even let my DH put his arm across my shoulders if we are out for a walk. Pay attention to what your body tells you in certain circumstances.


Gabbygiddens...Do not put yourself into a panic. THIS IS TREATABLE, do as suggested by you DR. Trust me I know the fear involved. The sooner you find out, the sooner you can get treatment. The reason for the tests is to rule out any number of possabilities. I'll keep you in prayer sweetie. And please let us know how you make out with your appointments.
i was diagnosed shortly with this disease and am concerned about the memory and cognition , plz tell me about the memory the cognition the ability to learn coz am preparing for my phd only thinking if this disease could ever affect my life !! i read about it , but i need someone with the same disease and experience to tell me thank u in advance
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Old 04-24-2015, 03:42 PM
 
1 posts, read 632 times
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Default Fear

My wife was recently diagnosed with this. Up to this point (27) there have been no sign of any serious issues. Now, since the diagnosis and the Spinal tap, I have not seen her without being in pain in 2-3 weeks. Its getting to a point where I have almost lost my job because she cannot take the children by herself.

We have a 6 and a 2 year old whom I cannot leave her with due to the migraines. The medication does not seem to be working but we dont have a new appointment with her doctor until the 29th. Are there any home remedies I can use to try an curb these headaches? {shower, bath, massage) anything I can do to help?

TheHusband
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Old 09-21-2015, 10:39 PM
 
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I was just diagnosed with this condition Sep. 15 2015. I do admit I am overweight but it hard for me to exercise, I have a chronic pain condition in my lower abdomen (they think it is endomitriosis), terrible condition in my feet (have been to a podiatrist and received orthotics and cannot use then as they hurt so much(had this condition from about age 4)) and carpel tunnel in both hands. I have debilitating migraines that usually last for about 10 hours at a time and also take a long list of pain meds for my pain condition. I lost my job 16 months ago and I am afraid that I am going to lose the one I just got (having trouble studying for my exam (Insurance Broker)). I am scared that I will not be able to afford these new meds. How can I work if they will make me more tired that I already am with my other meds (taking tramacet, Oxycontin, gabapentin...). Sorry if I sound like I am a baby, it is just too much to take. I can't sleep anymore because of the pain ( usually get about 3 hours a night(I also have sleep apena(big surprise))), anxiety and depression(yea, I have that too). My doctor was nice to start not pressing the fact that I need to lose weight as he knows what I am dealing with. Sometimes I wish i could end it.... I actually have tried it before....
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