Pseudotumor Cerebri

[NJM75116]

I was diagnosed with PTC last year.  I have had many LP's with CSF close to 400 each time.  I have had an optic nerve sheath fenstration last year as well as gastric bypass surgery all belived to be the cure for my PTC.  This year I had a lumbar shunt installed.  I am continuing to have headaches, throwing up, and have been in and out of the hospital many times.  Doctors pointing at each other one says it is a GI problem the other it is the PTC.  Now my neurosurgeon wants to remove my shunt.  It is causing bi-lateral subdural hemotomas which are getting a little larger.  My neurologist has realeased me saying he cannot do anything else for me.  The neurosergeon is going to release me once the shunt is removed saying I need a head and pain management specialist.   Did I also mention I have had a neurocongitive test and have been deemed unemployable?  I need someone who knows PTC.  I was also given Fentanyl patches which have a side effect of increasing the CSF.  I need an expert.  It is my hope I can find someone to help me.  My insurance has mentioned sending me to a MAYO clinic.

Thanks,
Sorry for any spelling errors it is all part of the PTC.  


This discussion is related to Pseudotumor Cerebri and abnormal CSF tests.

[AJM0202]

I was diagnosed over a year ago with Pseudotumor cerebri. My pressure was 25 , which I was told borderline. Anyhow I have tried topomax with no help, and then diamox which I ended up being allergic to. My new neurologist suggested a LP shunt. So this past week the neurosurgeon referred me to a neuro ophthalmologist..the neuro op basically told me I had been misdiagnosed that pressure of 25 was normal and I have no paps so he claims it must be aura Migraines and that this past year was a waste trying to fix it. So he declined me getting a LP shunt.  I left in shock and now I'm like wth ..I just want relief.

[Mexico021404]

Yes apply for disability ASAP. I was approved right away.

[cjam12]

I was diagnosed at 18 yrs old in 1998 and did a spinal tap and everthing went back to normal. Many years later I now have it again (just started in May of this year) now 32 years old. Had the spinal tap again with not much change this time. I have been on Diamox for about 3 weeks now. I seem to be experience almost every side effect on the list from this medication. Will these go away?  I don't have the headaches really bad this time, most of the pain in in my eyes. My vision is clearing up and seems to be a little better but the pain is still there. I dont really know a whole lot about PTC, no one really explaned anything the first time I experienced it so I really was not aware that it would come back again. I have been searching the web looking for all the information that I can to educate myself about PTC. I am guessing I might be a mild case but have no way to actually know. I am hoping by reading all of your posts I can undersatand PTC more. I am currently in a study that is being taken place for PTC.

[CooperG]

Hi ro...I'm cooper and was searching for home help ideas to manage pain, found u all and desided to write...I was diagnosed 1yr ago and was refered to neurologist in seattle, wa...with the months goin by with no word back from any doctor..I'm losing hope and sanity! I've considered drilling a hole into my own brain because my symptoms are taking my quality of life... I feel i have no suport and know my friends/fam don't wanna hear everyday how I wanna be happy, but I'm suffering! This helped for the moment..thanks for letting me rant

[selmaS]

  Hi...I know how frustrated u must feel...and I wonder if u have a CSF obstruction as well, were u check for a syrinx? Chiari?

  These issues can occur together, but u can have PTC with out them too.

I am not sure what type of Dr u r being seen by, but u may want to be seen by a NS that specializes in chiari and related conditions such as PTC.

Many with PTC and chiari can be found in the chiari forum....feel free to stop by-http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

   "selma"

[MSTETE]

I was just dx with Ptc in april, I was told that the pressure in my head was 300 which was very high. I have been off work since may 13,2011, I told my DR about all the different side effect , I was having from the Diamox, she pretty much said that I can keeping taking the meds or have a lp done every week or have a shunt put in. I told her that my speech is getting bad and that the tingling in the hands and feet, I told her that Im still having headache. WELL SHE FEELS I READY TO RETURN BACK TO WORK FOR 8 HRS A DAY, I DONT KNOW HOW I'M GOING TO MAKE IT

[gloriousgigi]

I was diagnose with PTC/IH in Feb. of last year. My optometrist noticed that I had papilledema and suggested that I may have PTC. When I was admitted to the hospital, the doctors found my case unusual since I was not morbidly obese, obese but just 10 pounds over my normal weight. The neurologist said that my spinal shunt was actually too small and that my weight gained was adding pressure to my narrow spinal opening which caused the fluid to build in my brain. When I was released from the hospital I was sent to see a neuro-ophthalmologist. He told me to take diamox (which I hate! It makes all food taste weird and it causes my hands and feet to tingle so bad that it almost feels like I'm pins) and lose weight. I have lost the weight, but it never seems enough. Every visit I have to lose anywhere from 10 to 15 pounds more. (This is very difficult because  I have never weighed less than 150 pounds). Can anyone else relate? I just need to know if the diamox tingling is really severe. I've read that it is. Can anyone shed some light for me please.  I really want to get off the diamox because I'm getting married next year and the Dr. says it'll be hell if I get or try to get pregnant.  

[Cath278]

Hi Jenny115. I am sorry to hear you have had a diagnoses of IIh, but at least you know what is wrong now.
I was diagnosed in July 08 with IIH and I have paps,as well.
Paps, that the short name for Papilloedema, which is swelling of the optic nerve, caused by the increased intracranial pressure.

I am glad to hear that you have seen a specialist in eye care as this is the most dangerous part for us. You can lose your eye sight, but only if you are not being taken care of properly.

Have the started you on any meds yet? Diamox or Topamax? They are the two we usually are prescribed. They help to bring the intracranial pressure down.

Have you had an lp yet? Do you know what your opening pressure was?
  

I hate to say, but all the things you are experiencing are all normal for people with IIH. I have all of them!
If you want to chat or ask some questions, drop me a pm. I would be glad to help explain  any thing for you. Cath278.

[jenny115]

Hello, I also have just recently been diagnosed with IIH and have a few questions. I went to my PCP with headaches who sent me to Neurologist. He referred me to a eye clinic and then was referred to a retina clinic. There is swelling, pressure and damage to the optic nerves in my eyes. Vision though is still 20/20........I have the headaches, yet I also have issues with memory loss and concentration. I cannot multi task without feeling so overwhelmed with an intimidate headache to follow and explaining myself seems to get harder and harder. The headaches are pretty bad some times and once I get them, almost immediately after-wards I am battling to keep my eyes open. I have children so napping in usually not an option. I am off work right now temp on short term leave and am awaiting to see if my employer will approve me for long term. My issues right now are the headaches, memory loss, concentration ,sensitivity to light and even being on the computer is a task as this makes me head hurt as well. Do these symptoms seem normal for IIH? Also anything that i can take to help with the mood swings or memory?

[headachesince2007]

Hi. I have PTC.  My headaches started feb 2007 but my doctors didn't really do anything until 2009 when they put in the LP shunt.  From the start of 2007 i have had 3 sinus surgeries all to rule out PTC.  According to my doctors the CT and MRI shows cyst on the sinus glands.  So OK, i got that done in hopes that my headaches is just cause by the sinus.  Before the sinus surgeries I have had 4 lumbar puncture and all with opening pressure of over 300's.  I was put on the regular dose of diamox for 3 weeks and when the pressure was still going higher I was told to take 2000 mg a day.  I know, that is over the max dose.  I was even given topamax also took it with over the max dose for 6 months. So, to make my story somewhat short, on May 2007 i had my 1st  sinus surgery and the headache continued. April of 2008 I had my 2nd and 3rd surgery also for the sinus due to the cyst came back and is growing.  I had been in the ER for more that 40 times since 2007 and the ER doctors had accused me of being narcotic seeker.  The accusation really got me coz none of the narcotics worked.  Here came Oct of 2008 and my neuro finally had diagnosed me with PSEUDOTUMOR CEREBRI.  After all the pain I am scheduled for LP shunt on Feb 2009.  Everything went well with an on and off headaches but I learned to control until Nov 2009 when the shunt got dislocated.  I got the shunt revised. When the revision was done my headaches continued and another surgery was made to unclog the shunt on Feb 2010. May of 2010 my lumbar puncture opening pressure was 276 and I just was crying coz I have had enough of my headaches. So on June I got a new shunt with a valve. woooohoooooo. Finally, I hope this will work better than the previous shunts.  
One question to everyone though.  Did any one applied for state disability. Can government help with health care coz I've been in and out of work and my insurance does not cover everything.  I was thinking of applying for medicare and medi-cal/medicaid.  Do we qualify?  Did anyone try?

[Cath278]

Hi Im back again. Ok, Lets start at the "new"beginning. You saw an eye dr and he must have seen paps, Papilloedema, swelling of the optic nerves.? If that is the case, he should be able to refer you to a neurologist, which is the dr you need to see next and soon.

Once you have an appt with a neuro, they will do a lot of tests, ex,cat scan, MRI.This is to rule out anything more sinister.Once they all come back clear, you will have a lumber pucture.this is the gold star test to see if you have IIH,its new name,Idopathic Intracraial Hypertention.
Your "opening pressure" should be between 11-13,It can be as high a 20-22 if you are very overweight but over 20 will give you a diagnoses of IIH.

I am not a dr but a patient with IIH and because of your paps and headaches  would say this will be your diagnoses.

A note about the pain killers.You first should get them from your dr, so they know what your pain is like.Also over the counter meds dont really work for this type of headache as you have found out. I think, you should take the pain meds as the pain begins to climb, at 4-5. If you allow it to go to a 10, you cant really control it anymore. I have plus a lot of others have found this to be true.

Also, try and rest twice a day. Not a sleep, but just lay on the couch, with your head ata 45degree angle. It does help.
Pm me if you want to talk.Hope you are feeling better, Cath278.

[Cath278]

Hi. just saw your post but I am soo tired I cant really relpy, Give me a few hoours sleep and I will be back to you, ok? I am Cath278 from the above posts. I have had this illness for over two years and have a VP shunt and paps Paillodema , swelling of the optic nerve. I will help you figure this all out . Cath.

[jflake]

Oh, as far as the weight is concerned I was told to lose it and it might help.  I had bariatric surgery as a desperate attempt at relief and I have lost 88 lbs since Feb 22nd 2010 and it has made no difference to the pain in my head.  I am no longer diabetic, no high blood pressure, no congestive heart failure, no sleep apnea, ect.. as a result of the weight loss so it has definatley been good for the rest of my health problems, but the headaches...not at all.

[jflake]

So I just read through this commentary on Pseudotumor after looking it up because one of the eye doctors I saw today made a comment to me asking how long I had a Pseudotumor.  I looked at him and said I had never heard of it and asked if he knew something I did not.  His reply was oh, maybe I misread something.  That said I am now online looking this up and low and behold after 2 years having a continuous headache that varies in intensity with things such as elevation changes, sneezing, coughing, vomiting, stress, or exertion of any kind I read symptoms that are like a list of what I am dealing with.  I started out with a spontanious spinal fluid leak, they did a blood patch, it worked great for about a week, then the symptoms were back with neurological imparement such as balance issues, ringing in the ears, intermittent vision changes including temporary blurred vision and loss of periferal vision.  My memory was affected and it seemed the worse the headache the worse the neurological imparements.  That said they discovered that I had a blood clot in my left transverse sinus and after a year and a half trying to treat it they put in 3 stents.  This changed the headaches a bit but did not get rid of them.  Now we have reached the two year mark and I still have this rediculous headache and neurological symptoms...that said just the other day the whole right side of my body when completely paralyzed.  The ER docs thought I was having a stroke and air evacuated me to Phoenix St. Josephs.  They determined I was not having a stroke and after a few hours my ablity to use my right side returned, and has subsequently returned to normal, that said they are calling it a Hemiplegic Migrain.  My question for everyone is...Am I losing my mind????  I have a couple of days a week average that on a scale of 1-10 (10 being the worst) my headaches are a 3-4 and I can tolerate them.  The majority of the remaining time it ranks as a 8-9, and I even hit that 10 mark at least once a week.  I am terrified of becoming addicted to pain meds so I don't take them until my head hits a 10, and usually by then I am crying and being an unbearable witch.  I am on the waiting list to get an appointment at the Mayo Clinic but that list is 6-12 months before they will even schedule you an appointment to get seen.  The last two years I have been treated by Barrows Neurological Institute, but my Doc just left there and referred me to Mayo.  I thought it would be wise to see a pain management specialist in the interim, but they said they could not help me and referred me to Mayo.  I am caught in a loop here and wondering if there are any home remidies that people have found that might help.  I wish the very best to all of you and appreciate your time and comments.

[Knockoff216]

I am 32 years old.I was diagnosed with PTC last month, I have been blind in my left eye since I was 8years old. My right eye now has blurred vision. I was also diagnosed with secondary empty sellas syndrome 2 months ago, which is what made the doctors start listening and send me on to the other doctors. My doctor has never told me to lose weight, as I have gained over 30lbs in that last 6 months. I have done everything to try and lose and I keep gaining. Has anyone else had this problem?
Vhender- I have noticed sometimes if a headache is unbearable and I eat something it releases a lot of pressure. I always wondered why, and keep forgetting to ask the doctor. I can't be positive if it is sugar since I have been eating better.
What to do, What to do!

[bosslisa]

I was diagnosed 3 years ago and have been put on 1500 mg of diamox a day and told that I need to loose weight.  I have lost 40 lps and 5 ft 9 and weigh arout 215lbs.  I have the worst headaches that I just can't function and my doctors are not very supportive.  They give me hydrocodone 500/5 but it does not touch the pain somedays.  I used to go in and they would give me the lumbar puncturs and now they are saying it does no good as my body rebuilds the fluid within 15 minutes to an hour.  Any advice on what to do.  I also had to retire from my job and I'm 40 so I have no medical and ss denied me twice saying I can work eventhough my docs won't release me.  Binder and binder is working on my case until then no ins.  Life really ***** for me.  Ihate it.  It has taking over me.  Please help.  Lisa.  ***@****.  Thank you

[thearmbarkid]

I just got out of the hospital today; I was diagnosed with pseudotumor cerebri after experiencing memory loss and confusion at home, with a HUGE headache.  I got an LP in the ER, where the doctor said my opening pressure was one of the highest he's ever seen.  I saw an ophthalmologist while in the hospital, and he said there appeared to be some pressure on my optic nerves...thus the PTC diagnosis.  I was started on a diuretic and sent home, even though the pain in my head hasn't subsided.  This hurts so bad I can hardly function; my doctor told me to take a Tylenol if it hurts, since I'm allergic to NSAIDs (I was on Vicodin while in the hospital, and that realy didn't touch the pain.  I said this to the nurses and doctors, who were completely unmoved.)  I'm at the end of my rope, and have absolutely ZERO faith in doctors. I'm really starting to contemplate suicide at this point.  I can't deal with the pain. I've been having migraines since I had a concussion in 1998, and that pain is NOTHING compared to this, and there's no relief in sight.  It's both maddening and discouraging that these people who are supposed to have my best interest in mind are treating this like a simple headache, and don't care one iota what kind of hell I'm in right now.

[vhender]

I wanted to let you know that I think that it is great that all of you are helping one another.

My daughter has IIH/PTC...we have run the gamut of Dr's which I have to say has been eye opening.

I agree with all of you that say to tell the Dr's the back the hell OFF! You need time to seek out information to educate yourself and then form a course of treatment that will be the best plan for you.

I have told many a physician that we are not in it for the band-aid we are in it to win it and want a solution to this illness.

I want to share that we have cut out many things that seem to help. We as a family no longer eat or use products that contain dyes or anything and I mean artificial. We try to live by the motto "if you grandma can't identify it well don't eat or use it"

As for the medication and the form letter reply of the "SHUNT", I have learned that this is a serial answer that the doctors must take a class to hand us all the same song and dance :(

I know that there is no answer YET but I feel it in my soul that there will be and the doctors are missing something that is outside of the "box"!

I am hopeful and this thread makes me happy that there is a place that people can come to regardless of where they are in their or their loved ones diagnosis is!

I am happy to share any of my knowledge or experiences.

We were lucky to be accepted into a world renowned neurosurgeon that has his specialty of IIH/PTC. I am not fearful nor ashamed to step on any of these doctors by wringing out there brains with my barrage of q's...so I appreciate that I can post to this forum and hope that we all can brain storm together!

I am trying to reach kzhotrodz who posted in Sept. it is so odd to me because she describes the exact symptoms my daughter has with the right atrial pressures. I am curious of any of you have had this identified with a mvr/cardiac cath test done. I have found out that most doctors do not seem to continue with more testing other than finding elevated pressures and then giving you the blanket her you go diagnosis. I am curious as to WHY and don't think testing shld stop until we have found WHY!

I would like to gather info so I can go and approach my daughters neuro and neuro surgeon along with her cardiologist. Any info would be fantastic!

Also has anyone else done the cranial sacral massage or acupuncture?

Does anyone have trouble with sugar? Do you notice 2hrs plus of eating something with sugar do you have a change in your headache?

THANK YOU THANK YOU THANK YOU!!!!!!!

[Henricogirl]

I must be dreaming I have had ptc for a little over a year now And i have never meet anyone who has it. I am so into the docs know nothing it took the best nerologest in virgina 9 mounths to dignos me. Then theres my mom she says this will only last at the most 2 years. Now i know that it is all bull. Im not shore if this happens to any of you but I pass out with ptc they said it was a sudden rise in spinal fluid that causes me to lose concenness it has happend to me almost 20 time this year. Then my mom ask me if I was faking can you belive it she sits with me while I cry bc of the pain and because every time i pass out Im afraid I wont wake up. My parents wont let me take anything stronger then 3 Advil and it does nothing the when I call from school they say I need to stick it out. They have no Idea how much they hurt. If you have any advice on what to say to my parent bc sence I started the school year it has only gotten worse. Im sooooo glad i have finaly found people that understand.

-Tori

[tlc1723]

I'm so relieved to have found this site - sad, too - I'm sorry so many of you are being affected by this...I,too, was diagnosed with PTC about 5 months ago.  I was put on Diamox, but it caused me to have to go to the ER repeatedly for kidney stones, so they took me off of it.  My new Optho-neurologist is getting ready to try me on Topomax.  Like most of you, the main thing that I've heard is "lose weight".  Unfortunately it seems like when I've tried to talk to doctors and other people about the fact that I've read that weight loss doesn't always work - well, I get the impression that they think that I'm somehow trying to make an excuse for not losing weight or something.  I am losing weight and have been trying to exercise more  but it's been a slow process (I'm waiting to have surgery in a week or two for an umbilical hernia that has sort of restricted my ability to exercise).  It's all really scary.  I told my husband that I feel like I have some sort of mild dementia or something.  I'm not as good at thinking about things as I used to be. I feel like I miss social cues, that I don't really know what is going on sometimes.  I'm a lot more clumsy.  I get tongue tied when I try to explain things, and not just logical things like "Where did you put the car keys?", but things I've never had a hard time explaing before, like how I feel...Mainly I just feel confused and scared that I can't trust my own perceptions anymore.  
I just wanted to say that I really agree with what Mamita00 said to kzhotrodz about telling the doctors to back off.
I had to do that with the doctors I was seeing.  After I got diagnosed I all of a sudden found myself in a whirlwind of doctor's appointments.  I was going one doctor or another almost every day for months.  I finally had to just put a stop to all of it.  I refused to see any of them for almost 6 weeks while I sorted everything out.  In the end I decided to change doctor's (the first one was quite a drive from my house, plus I didn't quite care for his bedside manner).  I have refused the operation for now, but have agreed to being closely monitored.  This way I can continue to exercise and to lose weight as I am able, knowing that if my eyes start to get worse they can catch it pretty quickly and I can opt for surgery.  I ran across an article that suggested trying Cranio-sacral Therapy as an alternative treatment and so I have been trying that, as money permits.  I have only been twice, but for me, personally, it has helped, especially the 2nd time...my headache was so bad my husband took me to my therapists house in my pajamas and, in an hour, I felt great.  I don't know why it worked for me, but it did.  Other than that I just take my vitamins, try to eat right and sleep right and try very hard not to be stressed out.  So far I feel  preety good most days.  I hate the headaches, the nausea and the confusion, but I'm trying really hard to work around them.  I guess I'm trying to accept that this may be a cronic condition that I have to live with, not something that is going to just go away.  I'm 42 yrs. old and this PTC thing is the latest thing on a list of seeminly unrelated medical issues that have come and gone for the past 4 years (gallstones & emergency surgery, a hernia that was a result of that surgery, having an (undiagnosed) allergic reacion to all the meds I had been put on which resulted in sores on my hands and feet so bad I was bedridden 2/3 weeks a month for almost 2 years).  But the worst thing over the past 4 years has just been the stress of being sick/feeling sick/worrying about getting sick.  Since I took my little break from the doctor's 4 months ago, things have gotten much better, mainly because, like so many people here have already done, I stopped letting the doctor's scare me and push me around, especially when they don't even know what causes this or what will cure it.  The way I figure it, when it comes down to it I am my own best judge of what is going on.  Until they figure out what causes this, the doctor's will only be able to guess at the treatment.  It might be an educated guess, but it's still a guess.  And I'm sorry, but I just think that just because someone has the technical ability to perform a surgecal procedure it doesn't necessarily mean that they should race to do it, especially knowing that they don't really know if it will work or not.  I'm not saying there isn't a time when surgery is necessary.  I'm just saying that I think doctor's who are treating this need to proceed with caution...slowly  & carefully...I'm sorry, I know this is long. This is the first time I've really talked about all this with other people who are going through it too...I guess the only other thing I would say is what some of the other folks have said:  Trust your instincts! You know your body better than anyone else!  I wish us all a pain free, beautiful days.

[mamita00]

That's terrible that you have so much to go through. First of all..slow down.Tell the docs to back off if your daughter is not in immediate danger. You need time to think and to process what's happening and what may happen. And there's no need for scare tactics. Do understand that there are unpleasant to think about treatment options, but what sane person wants a shunt :) ?  It's out of necessity if that is your decision. It's ok, breathe.

You're not a bad parent, ptc happens. I gained weight due to medical reasons and medicine. The ptc hit me while heavy but now  I'm 30 lbs. lighter and it's still here so the weight thing is a **** shoot. Definitely not a cure as some would have you believe. Change what you can because that will help her in the long run and her case may be different from mine and others whom weight loss didn't affect and she may be that percentage that it does change for the better.

I hope you get some peace of mind and good answers. You're your daughter's voice so speak loudly and make them hear you, not just their own voices. Write down your questions and make sure they get answered. Best of luck- Kim

[kzhotrodz]

My name is Karen and my sweet 11yr old daughter has been suffering with horrible headaches for almost a year.  She has missed a half a year of school because she is in so much pain.  She doesn't do anything she likes to do any more not even play with her friends.  She was diagnosed with PTC 2mo ago and 2day we saw the nuerosur. She;'s had a LP  all the MRI's MRV's Venogram, and The only thing the surgeon really hit hard on was weight loss, weight loss, weight loss.  It makes me feel like a really bad parent.  I have 2 other children and my husband died almost 3yrs ago of a Brain Tumor.  So this happening to my baby is killing me and now all my kids have to go thru is dr. test. hospital stuff.  They want to put her in the hospital and stop her Diomex(can't remember how to spell it) "Drill into her Brain" Dr.'s exact words in front of my daughter put a rod in check the pressure. Restart the Diomex and recheck the pressure to see if it has changed if it hasn't he wants to put a shunt in.... I have no idea what is happening, why this is happening to her and what to do?  If she looses 40 lbs she'll be 100 lbs at 4ft7 in and the Dr. is convinced that if she looses the weight the headaches will go away.  Her LP was at 30 and her venogram showed nothing unusual except she had pressure on the right side of her heart but the pressure is at 10 and he said that was nothing to be too concerned about.  I have no idea what I am even talking about.  But thanks for listening because I'm really scared.

[mamita00]

Hey everyone! I've been missing out on the party! So many new people that I haven't met yet. To them I say hello, my name is Kim.

Sorry Lindsay, now specifically to you. I myself am without insurance and have had to work magic so to speak. I know it's not what's first on the list of things we want in life but try for state medicaid. If you can't get that then try your local hospital. They may offer a community health program such as a free clinic and low cost doctors. I know with this being such a rare and special illness that makes it more difficult. Too the hospital may offer a low cost insurance plan. Also, do you already have a neurologist? If you do explain your circumstances. There are good doctors out there who are willing to cut their fees for patients w/o insurance. Mine did and I am very thankful. Your local family independence agency should be able to help you or at least direct you to someone tat can or even the health department. They shouldbe in the front of your phone book. I hope you get the help you need. I was terrified when w lost our insurance. Losing his job was bad but with all of my health problems I thought I was going to die at the thought of no insurance! I'm getting through it and you will too. Hang in there, you are not alone!!

Hugs,
Kim

[NJM75116]

Thank you for your comments and concerns.  My pain management dr put me on fentanyl patches and I had hallucinations.  I am now on oxycotin.  It helps my headache but, I can no longer work.  They even denied my life insurance. once they found I was on oxycotin.  I have another CAT this week to see if my hematomaos have increased.

I wish you all the best and a pain free day.

About the weight I weighted 247 when diagnosed and now I weigh 140....it changed nothing.

Take care everyone!  Nancy