I am not sure where to put this, but I would love to hear someone elses opinion? I am 30 years old and until last year Jan. 2008 I had no medical problems. I do not smoke, drink or do drugs. I did however have two bulging disc in my lower spine. My back went out in 2007 and my family doctor subscribed 600 mg Ibruprophen for pain three times a day. I did this for a while until I could manage the pain without. Durning this time I also went to a chiropractor because i had a pinched nerve (siactica). Anyhow, shortly after my back problems, I would get muscle twitches in my arms, legs, back, sides, neck and head. The first twitches was in my right eye. I thought well maybe I am not drinking enough water because the twitches would only last a short while. And still yet it happens but not very often and not very long. Usually when I am relaxed a spot will jump every once in a while.
But then very odd things started happening and still does. When I wake up in the morning sometimes not all the time I cannot see out of my right eye. It doesn't last but about 6-10 seconds and full vision returns. Before this about 6 months I had a wierd noise in my ear went to the doctor and was told sometime it was normal. Not to worry! Boy was she wrong?? So as you could imagine waking up not being able to see I rushed to the doctor!! Once there they told me they though I was going to have a stroke and rushed me to get a CT scan that day. The next morning I was called back to the office, only to be told it was negative and they could find nothing wrong. So I decided to go to the eye doctor and get me some glasses. I though well maybe it was eye strain since I was suppose to wear glasses but never did. I do the test and they say I have to go see a eye specialist because my optic nerve was swollen. So they send me to him and he says that both was swollen the right eye mainly, the left slightly. He wanted me to have a Ct scan and corodid artrie doppler done. (Forgot to mention my dr. did this test as well and everything came back good) I told him I already had these test done and right then and there he diagnosed me with Pseudo Tumor Cerebri (PTC). He told me I wasn't really big enough to have this problem, but if I lost some weight it could go into remission. So I lost 30 pounds and nothing!!
Here I guess it is on year and six months later and I do not think this is what I have?? Everything is on my right side! My swollen optic nerve, my pulsating tinnitus, and starting this week a new symptom!! The whole right side of my face including my eye ball tingles when I apply pressure to it and I have pressure behind my right eye, again!!! I have never had a headache and I believe that is very odd for someone who is suppose to have PTC! Anyhow this new symptom is totally on my right side of my face ( you could draw a line down my face and everything on the right side would tingle if you touched it!) I am concerned because they just say my eyes are chronic and they have me on Diamox 1000mgs a day. It is not good for me! Also it makes my vision worse with spots and the bright lights. I do not think he should of stopped trying to find out what was wrong with me. Does this sound like PTC to you? Can it just effect one side of your face? Do you have any ideals what else it could be? Could I have a tumor and they not find it on a Ct scan? Please give me some pointers someone! I have no insurance and I need to know what to do next!!! I am very scaried I have to get better or at least know what I am dealing with so I can take care of my family again, instead of them taking care of me!!! Please help??? Any thought would be appreciated and thanks for taking the time to read about my problem.
I would still say you have PsuedoTumour and that your just one of them `lucky` people who (so far)don`t get any headaches.
I too like you had a right sided problems,I do get bad headaches and they started on the right side so I went to the Opticians as I thought it might be me straining my eyes...the optician found that my right optic nerve was swollen,I had ringing in my right ear only at first.
I`m now nearly two years in with PTC and get trouble all over my head now with headaches and both my eyes are badly swollen although my eyesight remains quite good.
I agree with you about the Diamox it is a horrible drug and sometimes makes me think is it worth carrying on with it.
Oh and the weight issue is one that the doctors love to band about as a `cure all`....I wasn`t overweight but thought I`d indulge my neuro and lost Two stones and it made my headaches WORSE.
I think if you had a tumour then a CT scan would pick it up.
Hi. I also have IIH/PTC. I was a year being treated for the wrong ! illness till last summer and had all the tests done .They all came back negitive except the "gold star" test, the lunber puncture. My opening pressure was 45-4500.Very high. it should be around 9-15.
Have you had that done yet? that will determine if you do have IIH.I also have Papillodema, ( swollen optic nerves) in both eyes.I was not overweight before i got sick and the problems started with blurry vision.Like Anglepark said, be grateful you dont have the headaches! You need to go back and see your neuro and have a good talk with them. If we can help, just ask. Cath278.
Thanks so much for responding to my battle of uncertain!!! I have had this condition for a year and a half and I never feel satisfied this is what I have. Cath278, to answer your question, no i have never had a lumbar puncture. The only test I have had is standard blood test which showed my chlorestrol very high good and bad ( which is hereditary in my family, but I admit I could eat lots better lol) , they said I was borderline hypothyroidism but not to the point they want to put me on medicine! (which makes no since to me and I wonder if it is not my problem?) Other then that everything was wonderful with my blood work. I had a Ct everything came back good as well with that. I also had a corodid artrie doppler done and everything was fine with that as well. Other then my eye exam that is is all I have had done and the eye specialist is the one who diagnosed me with PTC. He just went by the Ct scan and the doppler and of coarse my optic nerves!! Matter of fact this is what he told me, "If i was a betting man if I was to give you a lumbar puncture the pressure would be horribly high.But since you do not have insurance and I can almost guarentee this is your problem and you have had a Ct scan and doppler done lets put you on Diamox 500 mg twice a day and see how that works." I am still on that one and half years later, except now he told me My eyes was chronic and I do not like that!! I have did some research enough to know most people have horrible headaches. I do not have headaches but I kind of wonder when my face goes numb and tingles when appling pressure to it if that is from pressure on a nerve or maybe some sort of migraine? The numbness went away today but it lasted 4 days total this time!! But it concerns me mainly because it only effects my right side, a person would think if you had PTC it would effect you whole head?? Oh I guess I should tell you I have never seen a neuro. I was never told to see one my eye doctor just assumes he knows. But I am not so sure anymore!!
Oh my God! You poor thing. You are NOT being taken care of properly! I dont want to scare you but this is unacceptable. You really dont know for sure if you have IIH and they are treating you for it. As for your optician... Are they even qualified to make these descions? Are they even an Ophthalmologist? I understand about the no insurance (I think) but could you not present at the emergence dept of a hospital? You have to find out the cause of the swollen optic nerves.If you let this go , and again, I dont want to scare you, but you will lose your eyesight, eventually. You have to see a neuro.They are the only drs qualified to diagnoise this type of problem.
Ok.Time to stand up and be counted,notsogreat! Get going and find out what help is available to you.Go back to your "eye dr" and tell him to get off his a*** and help you. Today! We will help you in as far as we can,promise. But you have to take control yourself now.Any questions? Send them on.Good luck. Remember, it might not be IIh, just something small that can be taken care of easily. Cath
No you are not scaring me at all I am beyond scared! Scared was 1 and a half years ago! Now I just want a diagnoses. Yes, my eye doctor is an ophthalmoligist and he is the one that diagnosed me. But what has me concerned is the diamox is not doing anything besides keeping the pressure off my eyes. My pressure is 16 on the left and 18 on the right. But my optic nerve in the right eye is still swollen. the left he side was spongy whatever that means? I thought I had floaters in my vision but he said it was my optic nerve not feeding to the brain properly? I have light sensitivity when I look at flourescent lights it looks like water ripples going over the top of them. He also said this is from the optic nerve. But the last time I went to him in May he said my condition was chronic and not to return for 6 months unless something changes like I start getting headaches or my vision changes. I told him again about me not being able to see when I first get up in the morning for about 6 to 10 seconds and he told me it sounded like lower blood pressure. He thought maybe it was from the diamox. But I think he doesnt know what he is talking about for the simple fact that is the reason I went to the doctor in the first place before the diamox! What could be wrong with me?? Honestly do not hold back, I would love to know what I am looking at!! I know it could be a tumor and someone even said at my church MS which I have no clue about? But thanks for telling me I need to see a neuro I haven't even been told that!! I am so disappointed!! Also if I have to have a lumbar pucture do they have to do it in the lower spine? I have two buldging disc in my lower spine and I surely need no more pain there!! LOL the small things we worry about huh? :0) Welll thank you so much for talking to me, maybe you can get ME lined out! lol
Hi.Ok. you can relax a little bit. The pressure your eye dr is referring to Ocular pressure.Pressure with in the eye. It should be about what your is, so no panic there! The pressure we all are refering to is with in your head.It is a build up of csf,(cerebral spinal fluid). Completly different. To find out how high the pressure is ( they call it opening pressure) you have to have a lumber puncture, which is in the lower spine. And yes , I have had a few and I also have disc problems. Its not always as bad as people say. You would get plenty of pain relief and Valium to keep you calm. But dont worry about that just yet!
Are you still hearing weird noises? Do they sound like your heart beat or a swossing noise? Do the lights still hurt? That would be because of the swollen optic nerves. We alll tend to wear sun glasses a lot. Are you still headache free?
Really, there are a number of things it could be but you do have a lot of the symptoms of IIH . But then it could be migraine or TN (trigeminal neuralgia) for example. You must find out from your Opthalmoligist why you have papillodema. there are a few reasons for it as well and you need to start putting the pitcture together..
Dont even think about it being a tumor or MS. You would have a lot more symptoms pointing in that direction. Dont worry. You are on the right road now to figuring it all out. If you need help with the questions to ask your dr, just jot them down. All the best, Cath.
Hi, you are not alone at 20 I was diagnosed with PTC and my pressures were so high for so long that finally after a spinal tap a week for over a year I decided to have a VP shunt placed. That however is a very complex ordeal and I have had 8 total brain surgeries now ( and a bout with bacterial spinal meningitis). I will tell you though that if your profession and religion etc. will allow you might consider finding some marijauna this will reduce the optic nerve swelling ( I was told by a renowned neurosurgeon to try it) I also went so far as to have gastric bypass to help lose enough weight to help with my issue although I did not meet the weight requirement. It did not help but now I am an ordinary size 10. Pseudo Tumor Cerebri is not something I would wish on anyone and I deal with it day to day. Even though I have a working shunt I have daily headaches which are only occasionally managable. My advice right now to you would be to try and manage the condition with Topamax and Diamoxx the side effects are a pain in the you know what, but they do help. Get multiple opinions and find both a good eye doctor and neurologist you trust. Do not venture into the world of Shunts unless there is no other workable solution. Also get both an MRI with a MRA and MRV scan this will allow the physicians to determine if it might be an issue with a cerebral artery or vein. I am very glad for your sake though that you are not experiencing the headaches. Keep me posted ~K8rhno
Hi! Thanks for helping me, I guess you have explain more to me then anyone yet. Yes, I do hear noises that sound exactly like my heartbeat that never goes away 24/7!! It is so annoying I hate it, that was my very first symptom which started about 6 months before my eyes. I the light does not hurt my eyes but my eyes react to the light by making tiny dark spots or I call it a water ripple that move over the light as I look across it (this usely only happens with flourescent lights mostly). No, I have never had a what I call head throbbing headache. If my pressure is high my neck pops and my whole head feels like my ear sounds if that makes any sense? It is very hard to describe things, sorry! :0) My eyes hurt sometimes like they are going to pop out at any minute. Almost like sever sinus pain. That brings me to a question! Since I have been diagnosed with PTC Jan.2008 I have had 4 sinus infections? Is this normal? Because until then I have never had anything wrong with my sinuses or a sinus infection! Also I have noticed it effects my nerve on the right side. If my pressure is really high my face on the right side will tingle and feel numb when I press on it! This worried me at first but when I take more of my medicine it stops. So I am thinking pressure or possibly a migraine? I really do not know! My last attack with my face being numb was last week and it lasted from Thursday to Sunday and then it just disappeared what do you think about that? Do you ever have that happen to you? *sigh* The not knowing is the toughest part!!
I am very sorry to hear about your problem i have the same problem as well you really need to have a lumbar punture done to check your fluid that only way you would know what is your pressure i have severback problem to if you get that done you will be on your way and you will know what going on.
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