seekhelp
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posted
Does anyone here have this condition? My neuro suspects I have it based on my symptoms. I've ALWAYS thought it's a strong possibility. I react horribly to Doxycycline. Repeat eye ultrasounds are showing abnormal pressures in the optic nerve area.
I can't stand or walk any distances without elevated head pressure. He said that's 'trademark' for this illness. My eyes are getting blurry all the time and pressure / headaches. Lying down is the only thing that helps. I'm very overweight too which is another major contributor towards Pseudotumor Cerebri. Balance feels off, stiff spine, etc.
Can anyone with this condition comment on how my issues align or do not align with theirs?
I'm most likely going to do a spinal tap. It's the ONLY way to determine CSF pressure. I've suffered terribly for 4+ years. Who cares at this point. Gotta step up and know for sure.
Can't take this much more.
[ 12-29-2011, 11:30 PM: Message edited by: seekhelp ]
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Keebler
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- I'm very sorry to hear of this new development. Truly I am.
However, I'm not sure a spinal tap is necessary. It can be very expensive, cause head aches for some time afterward and cause great pain.
There may be other things to consider, of course. However, the fact that you have lyme and this neurologist has not connected those dots is troubling. I'm not sure I could really trust his skill and that a spinal tap is really necessary.
Other stealth infections can be tested without that invasive technique. Most LLMDs know about all kinds of stealth infections that can go with lyme.
Can you talk with your LLMD about this FIRST?
Lyme CAUSES increased cranial pressure - and it can also cause this.
Lyme causes weight gain, too, often even with a good diet. Being overweight is not the cause of this.
Some of the patients in these abstracts below did well with IV antibiotics. I really wish you had a really good LLMD near you.
I know that others with lyme have had this and gotten better. Really. It is still possible for you, too.
. . . in rare cases of Lyme optic neuritis from Lyme-induced pseudotumor cerebri, . . . -
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seekhelp
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Thanks Keebler for all the info/suggestions. I really do appreciate it. It may be premature to say for sure.
First off, my neuro connects ZERO dots to this and Lyme disease. When I mention Lyme/TBIs, never has he even commented. He never said anything derogatory, but never cared to look into it. He basically said if I had a brain infection, I wouldn't be as smart/articulate as I am. He said I'd be dead. Hmmm..
I have not asked my LLMD on this. The reason for the spinal tap would not be as much to test for infections, but moreso to know if the CSF pressure truly is high. If so, that is a clear cut reason for me to do some serious steps. I can't function at all - can't drive. Brain fog all the time. I used to be very smart. It's humbling to know you lost a lot of your abilities due to head problems. Very difficult to accept.
I don't think any blood tests or other infection tests will give me any insight on my CSF pressure. Now I fully realize infections 'could' be the cause of the elevated pressure if in fact it is high. I truly believe I need IV to get better, but I have not done hardcore oral Abx treatment so...... My central nervous system is so messed up it's not funny.
I don't see the NY LLMD anymore. I do see a good one in IN who is relatively aggressive, especially with Lyme. Not so much with Babesia IMO. Neither LLMD suggested IV was needed. I've been ill for 4+ years now...Dr B clearly states in his recent talks it is. Tough to know, right?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seekhelp, Hi I have only met one other person with pseudotumor cerebri. I had this 15 years ago. Mine was first discovered by my pcp who I went to see for a migraine. He noticed the optic nerve that had pressure on it.
He sent me to see an opthalmologist who did a full work up on me and refered me to a neurologist. The neuro did the spinal for two reasons. One, it did measure the amount of pressure in my spinal fluid and second he drained some of it that relieved the pressure. I did have it a second time and had to repeat the proceedure again. This was before the lyme too.
My friend who had this had a shunt put in and it drains constantly to relieve the pressure.
No medications were able to help this. You are correct there was no blood tests to tell what was going on either. I am sorry to hear you are having problems. It can be painful from the pressure. I had spent a week in the hospital on toridol (sp?) shots to relieve the pain until after my spinal was done. I hope you get relief soon. Take care
-------------------- A little lymie... Posts: 104 | From Greener Pastures in PA | Registered: Sep 2011
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Marz
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A friend who had lyme developed this a couple of years after treatment.
Her vision was bad and they thought she'd need a shunt, but it was controlled by a drug and she's fine now. Still on a low dose of the drug.
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Lymedin2010
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Head and neck pressures were my first symptom. �Diagnosed same as you and was on Diamox for 1 month. �It helped at first, but after a week went on a roller coaster ride from hell.
Placed on IV Rocephin and it got me 90% by the 3rd week. �Second month added Mepron and Zithro, 3rd month Biaxin instead of Zithro. �4th month replaced Rocephin with Ceftin.
After the 3rd week I regressed and got progressively worst. �By month 5 dropped all others and took Doxy and Biaxin. �Doxy is known to elevate intercranial pressure and I felt it. �At first I thought I was getting worst, but stuck with it. �Somedays had to be in bed most of time. �
By the 2nd week on Doxy the neck and head pain melted away, for the first time in 5 months. �Unfortunately I ran out of Biaxin for almost 2 weeks and slid back. �
I believe The Doxy made the Borrelia form into cysts, just like Dr. Sapi had demonstrated. �In her in vivo test Doxy converted Borrelia Burgdorferi 200% into cyst form. �If I would have gotten Flagyl or even better Tindamax, I would have made progress. �My LLMD would not prescribe now. �Maybe by next month.
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Rumigirl
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PAB, one of the members here, knows a lot about Pseudotumor Cerebri. Both her sons have it badly, and had to have shunts implanted (and still suffer mightily). You could PM her.
A spinal tap is the only way to be sure about it. Although, your dr could try you on Diamox first. ANd, yes, you should talk to your LLMD about this, and what he suggests.
It does sound like you need IV, too, and quite possibly Babesia and/or Bart treatment---all as rx'd by an LLMD, unless you treat yourself via natural methods.
But in your case, Pseudotumor Cerebri is nothing to mess around with. ANd it's not a time to be treating yuorself (not that your were suggesting that). Don't wait on this one. Get going on it ASAP. You don't want it getting worse or becoming permanent, which is a distinct possibility. Don't mean to scare you.
BTW, although a spinal tap is nobody's idea of fun, and I would never recommend it for testing for Lyme, It would be worth it for this dx. I had one done a while back, and I was fine. Just know that you should stay LYING down for at least an hour, and ideally longer, as otherwise, you may leak cerebrospinal fluid and require a blood patch. ANd that makes for a wicked headache, I hear.
One more PS: fight for the IV and Babs, etc. tx that you need. If you need to move on to a more comprehensive LLMD, do so. I've fought hard repeatedly. It ain't fun, but you have to fight to get well with this all too often. Don't be afraid to speak up nicely. ANd if you need to bring someone with you for back up in an appt, do that, too.
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Keebler
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- Just found another good link. Note that some of the Rx used in lyme can cause this such as minocycline, etc.
(as can lyme, which is previously mentioned but not in this article. But one has to wonder if it's the antibiotics WHEN USED in someone who may be having a herx, etc.?)
. . . Certain medicines can increase your risk for this condition. These medicines include: . . . .
. . . The following factors are also related to this condition: . . .
Treatment . . . .
- full article at link above.
[I would also think the doctor would want to know the CAUSE. If Rx, change that. Have you been assessed for Addison�s or Cushings? Lyme really messes with the adrenal system. If steroids are prescribed, it�d be good to have your LLMD thoughts beforehand.] -
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Rumigirl
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PAB, one of the members here, knows a lot about Pseudotumor Cerebri. Both her sons have it badly, and had to have shunts implanted (and still suffer mightily). You could PM her.
A spinal tap is the only way to be sure about it. Although, your dr could try you on Diamox first. ANd, yes, you should talk to your LLMD about this, and what he suggests.
It does sound like you need IV, too, and quite possibly Babesia and/or Bart treatment---all as rx'd by an LLMD, unless you treat yourself via natural methods.
But in your case, Pseudotumor Cerebri is nothing to mess around with. ANd it's not a time to be treating yuorself (not that your were suggesting that). Don't wait on this one. Get going on it ASAP. You don't want it getting worse or becoming permanent, which is a distinct possibility. Don't mean to scare you.
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Keebler
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- My notes about wanting to know the cause should not be interpreted as a suggestion to wait - as others point out, this requires good care now.
It's just that the reason for this should also be determined (if possible) since there are so many variables. And, if something you are doing (or not doing) might be a contributing factor, it may be that a change in your actions could positively influence the condition.
Best of luck, especially during this holiday season. May peace, light, love and some laughter be there for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My sons have had PTC for 12+ years. A lumbar puncture is the only way to measure your opening pressure.
My 25 year old son has a VP shunt & his brother has an LP shunt.
My younger son is finally headache free after 12+ years of a constant, unrelenting headache. PTC headaches are much worse than migraines.
My older son still suffers 24/7 with a headache (9+ on a 1-10 scale).
Their neurosurgeons think it was caused from untreated Lyme disease.
I have a mild case and take Diamox when needed.
My kids do not have any eye problems.
There are several meds that can raise your ICP. Cycline meds are in that category. We can't take any Doxy, Mino, etc.
Seek - let me know if you have any questions. I think I've posted about this to you in the past. : )
-------------------- Peggy
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nonna05
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posted
I thought blurry vision,woozy ,some headache, were part of Lyme and Co-s in genereral..
"Special" docs give you the test with black/gray lines when you first see doctor....they ( 2 have never explained the test and what it proves, Just that I didn't pass. I have know idea how badly.
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seekhelp
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posted
Thanks everyone. I PMd Pab for more info. Nonna05, I took the VCS test online. Failed it.
I definitely am not going to blow this issue off. I have little choice as I just have been feeling bad lately. Can't function to any degree. It's really demoralizing.
If a spinal tap is the only way to prove it, then so be it. Of course, I hate the idea, but living like this daily for life I hate much, much more if anything can be done.
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Keebler
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- Nonna, Seek,
the VCS test - if you are referring to the Visual Contrast Test with Dr. S's neurotoxin site, well - just about everyone with lyme fails that.
In addition to neurotoxins, many with lyme have nystagmus where the eyes just can't hold steady.
The VCS test may be relevant somehow, as toxicity can cause Peudotumor Cerebri, but failing a VCS test does not prove Peudotumor Cerebri. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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My sons were treated with antibiotics long-term and the headaches never changed.
Other symptoms - very sound & light sensitive, head pressure, feeling like they had a bad sinus infection, dizziness, light headed, motion sickness, feeling better when they were in bed lying flat, and feeling better after a lumbar puncture.
Diamox helps me when I have increased ICP. My sons' opening pressures were too high for medication to help.
I know most people on here are against lumbar punctures, but when you have PTC, it's the only way to get relief other than a shunt. When their pain & pressure got unmanageable, my kids wanted to get an LP.
Caffeine & lying flat in bed can help PTC. If you use a pillow, it needs to be a flat one.
Let me know if you have any more questions.
[ 12-24-2011, 11:24 PM: Message edited by: pab ]
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
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posted
pab, everything you post resonates with my issues. 6+ months ago, I changed from a flatter pillow to a more expensive 'fancy' memory foam pillow. Caused me MAJOR issues after a few months. Very stiff neck, more head pressure, etc. I was in bad pain and it took a long time to connect the new pillow that was supposed to provide comfort actually was hurting me. I bought a cheap Wal-Mart pillow and the neck pain subsided 75%+. Pretty ironic.
Caffeine helps me too.
Got every symptom you mentioned...dizziness, light/sound sensitive, motion sickness, nausea, lightheadedness and much more. ALWAYS telling my doctors I feel like I have a bad sinus infection. To the tee. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I just got online and realized the links didn't work in my post. I fixed them.
Check it out. There is a lot of good info in them.
Merry Christmas!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
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posted
Everyone, my neuro sent me to Physical Therapy for vestibular rehab therapy and cervical therapy.
As usual, the PT facility director said my neck muscles are close to the worst he has seen (9.5 of 10). Stiff as a board.
He thinks the neck issues are causing the head pressure/optic nerve problems. I think it's BS honestly. No therapy has EVER helped me long-term.
My CT-scan of my head came back normal. Like others said though that doesn't rule out Pseudotumor Cerebri. He acted like that disease wasn't a big deal. I kept asking him what good in hell would therapy do if there was a huge underlying issues such as that? In my experience, 99% of PT facilities just want you there 3x weekly to rake in the cash.
My right eye is getting so bad I can't focus. Just constant pressure. Not good at all.
No one seems to be taking any urgency. My neuro didn't even bother returning the call of my opthamologist who found the increased pressure on my eye ultrasound. Real nice consider the neuro ASKED me to see him. Docs are real winners when it comes to follow-up, huh?
I was working part-time from home for years before, but the last month I've felt too poorly to do any work. I'm really down about it. I don't want to wind up going blind or something.
I gotta admit I'm pretty scared. 4+ YEARS off work now and still all conventional doctors act like there is no urgency to address my issues. What does it take to get their attention seriously?
My eyes are even worse since we got the parakeets and guinea pig. My wife/family gets real upset when I suggest getting rid of it. The bird feathers fly everywhere when they flap their wings.
I was at an allergist lately. They did extensive skin testing. I continue to be HIGHLY allergic to mold, pollen, dust, dog dander. I even tested posittive on my skin prick testing to lettuce and spinach. lol. WTH? They did some follow-up blood testing on the foods (IgE testing). Nothing was positive - no gluten, no dairy, no chicken, lettuce, nuts, NOTHING AT ALL.
I reacted pretty violently to the skin prick testing though. 30 min later I was literally trembling and cold as ice. Had some issues breathing. Muscles were locking up. They gave me 50 mg Benedryl and an Albuterol breathing treatment. 30-60 min later, I was a bit better.
I think my body is just done. Very allergic to penicllum / aspergills mold. The allergist wants me to do allergy shots to build up immunity. Is it worthwhile? I've got so many doctor appointments to follow-up on crap, I can't keep up. No end in sight. Don't have endless money to pursue useless things if no value.
My eyes do seem to improve some outside the home.
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Keebler
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- Sorry to hear of all this.
I think you might need to find the birds a new home. Maybe some family friends could adopt them and would offer visiting rights.
Can't address anything else right now but my hunch on light bulbs.
Do you use fluorescent (energy saving) bulbs at home?
If so, it would be a good idea to replace them all with the regular incandescent bulbs. They are not easy to find but Home Depot still has some in my area.
Vermont Country Store will continue to sell 60 watt and 75 watt.
10-year incandescent light bulbs -
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seekhelp
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posted
Keebler, I use all incandescent bulbs. Tried the CFLs for a week. Hated them with a passion. Got rid of all ASAP.
Thanks for the concern.
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sparkle7
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Sorry to read all of this, seek. I don't know anything about this illness. It just reminded me of CCSVI. I don't know much about that, either but I figured I'd ask if you have looked into it.
Have you ever considered moving to a place that's dry & sunny like the southwest? Maybe you'd be less allergic there? It would be sad to get rid of the pets. How about an air filter?
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Lymeorsomething
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One of the episodes of Mystery Diagnosis dealt with this condition. It can be a very dangerous condition.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
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Sparkle7, I have never been evaluated for CCSVI. It certainly is possible. I'm at the point where my spouse just is sick of me going to doctors and driving me everywhere. . Chasing every 'theory' is getting irritating to her.
I would LOVE to move to the Southwest, but don't have the means as I can't work right now due to my health issues. No money = no place to live/survive. My wife's job is here and she has no re-location opportunities. All of our family is here too. I HATE HATE HATE my state/area. My whole life I wanted to live out there.
Yes, getting rid of the pets issue is causing major fights. My wife is furious about it and says I'm just sick because I eat too much. She said I've been ill before we got the pets and I'm just blaming these additional issues on her 'Christmas gift.' It was a parakeet. The bird dander really floats through the air everywhere. Since we got the two pets, my symptoms have escalated. She doesn't care what the allergist says honestly. Emotions overweigh reality. She believes my illness has already taken all joy out of our lives. Tell me about it. I have no life.
Lymeorsomething, yes I know it can be dangerous. Too bad my physicians don't seem to care a whole lot. They'd be happy to wait 3-4 years to follow-up. It's really irritating me. Especially since I reacted horribly to Doxy in the past. I have no respect for 99% of the medical docs now. They have showed no compassion so why should I?
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sparkle7
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Yes, it really gets difficult on other family members. We do have to try to be considerate of them. I know we are the ill ones but it takes a toll. I happen to love parakeets - so, I can understand how sad this would be. I know people do have allergies to the dander. Is there a homeopathic remedy you could take? Or just try to keep the bird in one room & don't go in there unless you wear a dust mask?
I used to have a parakeet & he would fly into my bedroom in the morning & wake me up (we used to let them live out of their cages). You wouldn't think they have so much personality but they do.
Would it be possible for you to go & stay in the southwest to see if you would feel better for a few weeks? I know all of this is expensive & difficult. I felt alot better in the south but the money is up here...
I trying to figure out a way to go live somewhere else but there are things I like about this area, too. Like really good Italian food...
It's a process. If you knew it improved your health - it may be worth while to relocate at some point in the future.
Also, I was reading about a specific mold that grows in the Ohio River valley or somewhere...? It's quite dangerous. Do you live near it? I'll post a link in another reply.
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TF
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I have heard of folks with PTC but actually only met one person with it. She was in a motorized scooter. That was a result of the PTC.
I believe she said it was because it took so long to diagnose that she ended up in the scooter. She had a lot of anger about it. Was a young woman.
If this is the case, then I would make an appointment for the spinal tap a priority over all of these other appointments.
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sparkle7
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sparkle7
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PS - I don't mean to be diverting this thread away from the initial concern of Pseudotumor Cerebri. It's all so complicated. I don't know what I would do if this were happinging to me. I don't want to make it more complicated by suggesting other things.
From what I have read - the symptoms do overlap with alot of Lyme related illness symptoms. Can any of this be diagnosed with less invasive procedures like an MRI or other scan?
If the root of it is Lyme - do you need to go back & more aggressively treat the Lyme? It's hard to tell which came first or if this is something not related to Lyme.
Good luck! I hope you can make the best decision to find a way to get better.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I'm a mom of 2 sons who have lived with PTC for over 12 years. I have a mild case of it.
A lumbar puncture is the only way to diagnosis PTC. PTC is diagnosed by having a high opening pressure when an LP is done.
PTC is as difficult to treat as Lyme disease is. It's also as hard to find a good doctor that believes in it & treats it.
My sons have had shunts for 2 1/2 years. One of them is much better with a shunt and the other isn't. PTC is not always treatable.
My son's neurosurgeon believes their PTC is from untreated Lyme disease. My kids most likely won't be cured of PTC, but hopefully they both will be able to manage it without such severe pain.
Often people with PTC also have Chiari Malformation.
Losing weight can help or even make it go away. My kids are and have always been under or normal weight.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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