Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Friends:
I know it has been a long while since you have heard from me here on the chat board. At one time, I was here every day and have been a member since 2009. But, in the last year, as my disease has taken it's toll I've not been able to spend too much time online. But, now I DESPERATELY need your help.
Here's my request: IH'ers...PLEASE RESPOND TO THIS BY TELLING ME WHEN YOU WERE DIAGNOSED, WHAT YOUR SYMPTOMS ARE, WHAT TREATMENTS YOU'VE HAD, WHAT YOUR PROGNOSIS IS (Is there any hope you'll get better), AND MOST IMPORTANTLY, WHAT MEDICATIONS ARE YOU ON FOR PAIN RELIEF?
MM3
I know it has been a long while since you have heard from me here on the chat board. At one time, I was here every day and have been a member since 2009. But, in the last year, as my disease has taken it's toll I've not been able to spend too much time online. But, now I DESPERATELY need your help.
Here's my request: IH'ers...PLEASE RESPOND TO THIS BY TELLING ME WHEN YOU WERE DIAGNOSED, WHAT YOUR SYMPTOMS ARE, WHAT TREATMENTS YOU'VE HAD, WHAT YOUR PROGNOSIS IS (Is there any hope you'll get better), AND MOST IMPORTANTLY, WHAT MEDICATIONS ARE YOU ON FOR PAIN RELIEF?
MM3
Ok, here are my answers;
Diagnosed Sept08 ( after wasting a year being treated for the wrong illness)
Symptoms;
Hds, between 7-10, every day.
Balance problems.
Blurry vision bad eye pain, ,loss of lots of vision, black outs,seeing things ie, spiders and fireworks on a regular basis, loss of color and contrast.
Swooshing in my ears. Heart beat at night.
Hearing like I am under water all the time.
Poor memory.
Lack of concentration.
Bad speller.
Pressure sensation , all the time in my head.
Nausea, vomiting,upset stomach.
Treatment;
Meds.
VP shunt.
Steroid therapy.
Pain management with pain killers.
Told just two weeks ago, this is as good as it is going to get for me.
Pain meds.It a mix of paracetamol and codeine.
Once I can get the pain under control and maintain the meds regime, I can almost be normal, on a good day.
I hope this helps Khrys,drop me a line if you get time. Cath
(For those of you who know me here, some of this will seem repetitive...but, here it goes...)
I was Diagnosed in March of 2009 with IH, after suffering from daily headaches for twenty years prior. I was placed on high doses of Diamox and Lasix which didn't help and, in turn, caused a great deal of unwanted side effects. I also endured approx. 20 Lumbar punctures in a 9 month period for therapeutic relief. But, within 24 to 48 hours the CSF replenishes, so the punctures only provided temporary relief. My pressures ranged between 240 and 380. I was not obese, and so, my IH was believed to be secondary instead of Idiopathic. I was placed on Dilaudid for pain control...but, it rarely helped. Finally in November of 2009 I underwent brain surgery and had adjustable VP shunt placement. Of course, during the aftermath I had approx. 10 adjustments for pressures, several more LP's, a blood patch and multiple ER visits. In the end, what we found out was that I had a CSF leak (hole in my temporal lobe), and this was why my shunt wasn't working properly. The problem is that while the ENT doctor knew 100% that I had a CSF leak, they weren't specific on the location and therefore the ENT surgeon wouldn't repair the leak. The ENT doc wanted my Neursurgeon to repair the leak and my Neurosurgeon wanted the ENT doc to repair the leak. I was left in pain. The NS said that they could do a drain test and give me a secondary shunt...an LP shunt . BUT, the drain test is done while you are at rest which makes the test results mute because my pressures only rise when I am active, stressed, or with weather changes. My NS also told me that the LP shunt probably wouldn't work...but, we could try. The problem is the list for negatives re: getting a LP shunt is greater than the positives. The surgery is invasive (more invasive than the brain surgery), the healing period is longer, and risks are greater: infection, sciatica, cysts on spine and development of Chiari Syndrome (which would make me wanna kill myself!) Without thought my answer was "NO THANKS!" We talked about taking Diamox /Lasix on an as needed basis for high pressures but, those drugs never worked before and caused huge, miserable side effects. Additionally, because the therapeutic LP's only helped me for 24-48 hours, obviously using these drugs on an as needed basis won't work. I would have to take them constantly and then, if they work, I run the risk for low pressure headaches and a whole new set of misery! OH! And I forgot...I live in NY. My surgery...my NS, NO and ENT are in Ohio at OSU. My NO in Rochester, NY dropped me as a patient because my surgery was done in Ohio. Now all the neurologists in Rochester refuse to take me on as a patient because they say I'm "too big of a risk. My doctors in Ohio assumed that risk so I need to continue seeing them." All I had was my PCP.
At the end of the day, my NS and PCP decided to put me on a protocol for pain relief. This consisted of Dilaudid and Fentanyl patches with Phenergan as needed for nausea. He said he would learn everything about my disease and unlike other doctors who have up and left me, he swore, "He'd never leave me." BUT THEN, MY PCP DIED!!!! For each of you who have ever encountered a doctor who knew nothing about IH....who tried to "fix" you despite the fact you've already jumped through those hoops with no easy cure....or who treated you like a drug addict/drug seeker because you were taking pain meds for chronic pain...you know exactly what hell I'm living in now.
The new PCP knows nothing about IH. He kept asking me why my ventricles haven't burst yet? I said, "Because I don't have hydrocephalus....the CSF isn't overproduced inside the brain...it squeezes the brain from the outside." Yet, he had listed hydrocephalus as one of my problems. WHAT? Then he asked me if I knew that IH used to be called Pseudotumor Cerebri? I laughed. (He was so proud to have discovered that.) He doesn't understand why I'm on the pain meds and called my NS in Ohio to find out what can be done. The problem: He didn't speak to the NS....He spoke to his Physicians Assistant and she's a nasty B++++! She told the new doc that the ENT suspected a CSF leak...but, made no definite diagnosis. She told him that they could do a drain test or put in an LP shunt. I asked her if she told what IH was? She said, "No, he seemed to know what he was talking about (because I told him and he doesn't want to look like an idiot), and I wasn't going to insult a doctor by asking him 20 questions to see if he knew what IH was." I said, "I didn't ask you to. I asked you to educate him. To be honest with him about what I'm dealing with."
So, now...I'm screwed. I'm hoping to inform him of what IH does to patients through IH patients. Can you please help me? Through your stories, I hope to educate him. Thank you.
With love,
MM3
I was dx in April 2011 after a routine eye exam found swelling of the optic nerve (papilledema). From there I was send to an opthamologist who confirmed the paps and he sent me to a neurologist for spinal tap (op 28) and MRI (Normal). I had a programmable VP shunt put in in Aug 2011. I have had 5 adjustments to the shunt so far.
Prior to dx I had been complaining of neck pain, headaches, and extremity swelling for over 5 years, underwent physical therapy, drug treatments, and nerve blocks; none of which helped. After the shunt was put in, for about a month and a half I was free of neck pain, but the headaches continue on a daily basis. I have an appt with a headache clinic on Monday so I will find out what more, if any, can be done to help.
Symptoms:
Headache
Extreme sensitivity to light
Dizziness/Vertigo
Memory Issues
Neck Pain
Balance issues
Learning difficulties
Saying the wrong words
Misspelling words
Fatigue
Shakes
Trembling
Tingling in hands/feet
Extremity swelling (hands, face, legs)
Medications:
Diamox 500Mg Sequels 2x day
Hydrocodone 5/325 1-2 every 4 hrs as needed
Valium 5mg every 8 hrs as needed
I hope to get better but so far no luck. I have not been back to work since the operation in August.
Hope you find a good dr to work with you on this. I will let you know after Monday if there is anything else I can add that may help.
Best of luck to you,
Hope
I will write it all in as soon as I can, unfortunately today I thought pressure washing a part of the house was a good idea and am now in so much pain my brain can't even comprehehand full sentences. Promise to get to it soon.
So sorry for your troubles.
Diagnosed: November 2010, Symptoms started August 2010
Symptoms:
-Vision Loss (Papilldemia)/Blurred Vision/Double Vision/Dots & -Blackness
-Headaches, everyday: particularly bad with stress, activity, and weird weather.
-Tinnitus, a constant whooshing in my ears that would never go away.
-Neck/Shoulder Stiffness & Pain, it seemed like that's where the HA's started.
-Speech/Memory Issues, trouble remember words, jumbling sentences, and forgeting order of events
-Nausea when pressure was high.
-Balance Issues/Vertigo, feeling like the ground is/objects are moving
-Tiredness
Treatment/s:
- Diamox: 3,000 mg a day
- Flubiprofen, antiinflammatory (did not work)
- Flexeril, muscle relaxer (did not work)
- Cataflam, antiinflammatory (works at times)
- Baclofen, muscle relaxer (works at times)
- ??? another antiinflammatory but I can't remember the name
- Repeated LPs
- VP shunt (a lot of my doctors keep mentioning hydrocephalus too, like they don't understand the difference between the two conditions...)
2)headaches (moderate to severe), neck pain, eye pain (pressure sensation), nausea, vomiting, tinitus, heart beat in the ears, and fatigue.
3)many different medications: Lasix, Diamox, Verapamil, Octreotide, Vicodin, Restoril, Ambien, Propanolol,prilosec, zofran, topamax, Immatrix, methyl prednislone, and some others I can't remember.
I had an adjustable Strata LP shunt placed on 9/22/11. It is currently on the lowest setting, which is (.5).
I have done weight loss. I am 5'2, large framed, and was 213lbs now 160lbs. Still trying to lose some more.
4)yes, there is hope I will get better. I have different doctors telling me different things to do. One says lose more weight, the other says something is possibly wrong with my shunt, not sure what I'm going to do next. My shunt worked extremely well at first, very little headaches at all. Meaning when I first wake up and go to bed, each last about 5 min. Now, I am not doing so great. I have headaches all day again, my pain is any where from a 2-6 on 750mg of diamox and with my shunt.
5) I am only taking 750 mg of diamox currently. If need be then I MIGHT take a norco/vicodin 10-325, not often though.
hope this helps
Mal
I am so sorry you are having a horrible time. I'll write some answers in a bit, but for now just wanted to ask you where you are in NY? I am in Buffalo,NY. Are you near? Is it Dr Friedman you see in rochester? You can message me in private if you want...I'll write more in the AM
Nancy
Oh, boy. This turned into a novel. But you wanted to hear it.
I was diagnosed about a year ago. I had horrible headaches back into my 20's to the present. I'm middle aged now. Too many years in gut-wrenching pain and no diagnosis or help. I tried to hide it and function anyway but as things got progressively worse my life and my health took a major dive.
I have headaches almost every day, they range from 0-10, mostly 6-8. My current record is 3 weeks at a 10+. I was undiagnosed and all I had was ibuprofin. I literally wanted to jump off a bridge. Anything to make it stop.
I was diagnosed by a neurologist who is a headache specialist. When he took a complete history he felt a lumbar puncture was necessary, so we did one. My pressure was a little above 250. I also had abnormally high white cells and protein which we've never really explained (yes, they've been clean taps).
My symptoms (both IIH and migraine together)
Severe daily headaches
- pressure headaches like someone is squeezing my brain.
Sometimes it tingles or fizzes (IH)
- headaches that feel like a cleaver in the top of my head
(migraine)
Blurry vision around the edges
Floaters, greyed out areas in vision, flashbulbs in peripheral vision
Anxiety
Eye pain
Neck pain
Upper back pain
Diarrhea
Nausea
Confusion
LT and ST memory problems
Extreme Insomnia
A feeling like my brain is vibrating or buzzing
Pain gets worse with exertion, bending over, weather changes, caffeine, too much eye use, too much noise, visual activity, too much thinking, sunlight... the list goes on.
There's more. Let me know if you want to hear them all.
My doctor thought I was having more than one kind of headache - IH headaches and migraines. For IH I've been prescribed Diamox 750mg. It has definitely helped some but I think it needs to be higher. Migraines we haven't found anything that helps whatsosever.
Pain relief is tricky. Before I saw the headache doc I was taking daily ibuprofin and several times a week taking hydrocodone and cyclobenzaprine. The first thing he did was to limit any kind of pain med (even ibuprofin) to 2 day a week. That's a total of 2 days a week with pain meds, to prevent addiction and/or rebound headaches.
It was beyond terrible the first month. Then things got better. Instead of years of severe headaches every day, after the limitation I only had headaches only about 5 days a week. Doesn't sound huge but it is. An averrage of 2 days of respite is an amazing gift. (I was having rebound headaches on top of the two kinds I've been diagnosed with). When the headache is a 10 I want pain med every day, all day. It's a moot point now, though.
In time I found the hydrocodone wasn't working for me. It's just that it plus cyclobenzaprine put me to sleep, which is a kind of relief so I kept using it. So my doctors did a 2-fer. They gave me a huge bottle of Trazadone and told me to take as much as is needed to sleep at night (without this I only get 2-4 hours/night). And, if I have a headache that is a 10 and I just can't take it any more to take some trazadone and put myself to sleep for awhile, even if it is in the middle of the day. It doesn't reduce the pain, but I get a break from it and I can handle it better when I wake up.
For those of you reading this, don't worry about my dosing. I was told it would take a handful of trazodone to overdose, and it's not supposed to be addictive.
Botox injections. Too soon to tell if it works for me.
A surprise was Voltaren Gel for localized pain. The prescription kind, not over the counter. It seems to make my neck, upper back, shoulder pain a little better. And because it's administered on the skin not internally it's more targeted - just where it needs to be and nowhere else. Not for use for headaches, though.
Oh - I tried imitrex, propranolol, topamax, hydrocodone, oxycodone, cyclobenzaprine, tizinidine (spelling?). None helped. Lamictal seems to help prevent the headaches that are migraines.
Prognosis? Who knows. My last LP was 210-ish on a dose of Diamox 750mg. That's definitely going in the right direction. I still have symptoms, but it's a good step.
Oh, fun fact #34 about IIH: a pressure of 21 still isn't low enough for some people and they still have symptoms, like me. Sometimes you can't stuff people into a typical diagnosis or criteria box - we are individuals and we've learned we're often the .001% mentioned in all the literature. Yes, we really are 1 in 100,000.
http://www.editgrid.com/user/ih_support_group/IIH_Support_Group_Symptom_List
Password: IIH
ladyhorn1: I live in Rochester, NY. Dr. Friedman was my doctor until she couldn't figure out how to help me (see my story). Then I sought a second opinion from Dr. Katz and Dr. McGregor they did my shunt surgery and she dropped me as a patient. She REFUSED to see me because I sought help elsewhere. Dr. Katz and Dr. McGregor were pissed! They filed a complaint against her with the Medical Board. A doctor should never abandon a patient because they seek a second opinion. Last I heard she is moving out of our area anyway.
NaisiaB: Dr. Smith was the doctor I saw for two year prior to my diagnosis. Every visit I would wait for at least 3 hours to see him. Once they forgot I was there and left me in the room in pain hooked up to an IV until everyone left and went home!!!! He placed me on Verapamil which made me break out horribly in hives. And during the two years once mentioned IH as a possibility as I had all the symptoms, but, because I wasn't obese said I "didn't fit the profile" and never did a LP. Finally, he told me I just had migraine and he could no longer see me as a patient because he didn't know how to help me. (My PCP told me that if Dr. Smith can't figure out how to help you or if your disease isn't challenging enough for him...he'll drop you as a patient). Seems to be a trend in Rochester...LOL! Two weeks later I ended up in the ER, a LP was done and I was diagnosed. Dr. Smith is a joke.
MM3
My Symptoms
one very painful high pressure headache in 2008
followed the next morning and to this moment right now wooshing in my ears.
ringing in my ears
Pain in my left flank that feels worse when i bend over or bend my neck some ways. ( has since gone away since i've started diamox, also started the next morning after the high pressure headache)
Blurry vision
vision that would black out when i stood up for a moment.
dizzy
dizzy/balnce after laying down to standing up ( i would often run in to walls if i got up to fast to get the phone)
neck pain
shoulder pain
tender head
weight gain ( 40 pounds in two years also lost in less then a year after being on diamox)
somethings i'm not sure if it is part of a symptoms or just me
Bad spelling
mixed up words ( or making up new words with two other real words)
Both of those have been going on for ages ( never was a good speller) and because of that i'm not in a place to say it's because of IH or not but then again i have no clue how long IH has been really going on with me.
Treatments
well before i was dx i just used a lot of aspirin for pain( body pain is my main deal at least i thought it was) but that stopped the moment i started diamox
I've been on anywhere from 500mg of diamox to 2000mg of diamox
pain relief right now nothing, crazy i know but when i'm on the right dosing of diamox i don't need any, when i'm not on the right dosing i feel like i need to get something but with no insurance right now it's a great thing i can still get diamox with out paying an arm and a leg.
Rachel
Here's my request: IH'ers...PLEASE RESPOND TO THIS BY TELLING ME WHEN YOU WERE DIAGNOSED, WHAT YOUR SYMPTOMS ARE, WHAT TREATMENTS YOU'VE HAD, WHAT YOUR PROGNOSIS IS (Is there any hope you'll get better), AND MOST IMPORTANTLY, WHAT MEDICATIONS ARE YOU ON FOR PAIN RELIEF?