pseudotumor cerebri

[anglett]

I am hoping there is someone on here that might be able to give me some feed back on this. I went my neurologist today for the first time and I had a feeling he was going to say this because when I went to my optometrist he had mentioned I had papillodema in both of my eyes indicating I may have a pseudotumor. He wants me get a lumbar puncture next week and follow up with him to rule out the pseudotumor causing pressure leading to headaches. I have been doing some research online for causes on this condition. Now I know that the biggest thing is obesity and that obese women under the age of 44 are nearly 20 times more likely to develop this disorder. I am 30 and I'm not skinny. Good thing though is from a year ago I have lost 43 pounds and then another 22 pounds from the week I started CPAP therapy to today so I am a little proud that I was able to at least do that through the holidays. I have been struggling with the headache pain so keeping up with the exercise is brutal. I try though because every little bit I can loose it might help with the pain.
Anyways, I have noticed in research that pseudotumors can be linked to sleep apnea and was wondering if anyone had been diagnosed with one and what could be done about it. I am hoping that there would be something that could be done to alleviate the pain and pressure. Also, how can sleep apnea be linked to this? Is it the side effect of high blood pressure caused by sleep apnea? My blood pressure has gone down a little but not a lot and I was hoping so much that with the CPAP therapy it was lower enough to help me control it better.
Maybe this is just something I need to ask my doc but I was just curious and thought I'd see if anyone had experienced this.
I may not even have this condition and my headaches may be caused by something else but I will be finding out shortly.

[ThirdOutOfFive]

I'm sorry that I don't have any information for you. I will send positive energy your way, though. Good luck with the tests. And, congrats on the weight loss.

[anglett]

Thanks. I appreciate it greatly.

I'm sorry that I don't have any information for you. I will send positive energy your way, though. Good luck with the tests. And, congrats on the weight loss.

[Pugsy]

I have never heard of any correlation between the tumor or OSA but that does not mean there isn't. It just means I have not heard of it or known anyone with this conditions with OSA...So all I can do is send my good wishes and hope you get the answers you need.

I do understand frequent and severe headaches though. Mine were from my cervical vertebra dislocating and sliding back against the spinal cord. Wake up with a headache (a killer one at that) and go to bed with one. Hugely improved with the spinal fusion. I barely was functional with mine.

I sure hope you get some relief from yours.

[ThirdOutOfFive]

Please let us know about the test results and how you are doing.

[chunkyfrog]

Good vibes coming your way.

[Weesa22]

I too have pseudotumor cerebri and OSA. However, my pseudotumor was in remission long before I was diagnosed with OSA. I haven't heard of a correlation between pseudotumor and OSA its possible ther is one. There is still very little know about pseudotumor and what causes it. I was diagnosed 20 yrs ago and have been in remission for many of those. I still see specialists annually though to make sure I stay that way. If you do have pseudotumor it is important to have the spinal taps as that is the only way to relieve the pressure on your brain, relieve the headaches and prevent vision issues.

Personally I don't believe weight is as big a factor in pseudotumor as the doctors do since thin people get it too. Also I weigh more now than I did when diagnosed and have remained in remission.

I truly wish you the best and congrats on your weight loss!

[Kairosgrammy]

I haven't but I found this info on treatment etc. Hope it helps. Doesn't sound like its untreatable and very big possibility that with treatment and continued weight loss that the tumors will disappear. If not, though blindness can happen. Here's what I found.

Treatment
Treatment is aimed at the cause of the pseudotumor.

A lumbar puncture can help relieve pressure in the brain and prevent vision problems.

Other treatments may include:

Fluid or salt restriction
Medications such as corticosteroids, acetazolamide, and furosemide
Shunting procedures to relieve pressure from spinal fluid buildup
Surgery to relieve pressure on the optic nerve
Weight loss
Patients will need to have their vision closely monitored. There can be vision loss, which is sometimes permanent. Follow-up MRI or CT scans may be done to rule out hidden cancer.
.Back to TopOutlook (Prognosis)
Sometimes the condition disappears on its own within 6 months. About 10-20% of persons have their symptoms return. A small number of patients have symptoms that slowly get worse and lead to blindness.
.Back to TopPossible Complications
Vision loss is a serious complication of this condition.
.

I am hoping there is someone on here that might be able to give me some feed back on this. I went my neurologist today for the first time and I had a feeling he was going to say this because when I went to my optometrist he had mentioned I had papillodema in both of my eyes indicating I may have a pseudotumor. He wants me get a lumbar puncture next week and follow up with him to rule out the pseudotumor causing pressure leading to headaches. I have been doing some research online for causes on this condition. Now I know that the biggest thing is obesity and that obese women under the age of 44 are nearly 20 times more likely to develop this disorder. I am 30 and I'm not skinny. Good thing though is from a year ago I have lost 43 pounds and then another 22 pounds from the week I started CPAP therapy to today so I am a little proud that I was able to at least do that through the holidays. I have been struggling with the headache pain so keeping up with the exercise is brutal. I try though because every little bit I can loose it might help with the pain.
Anyways, I have noticed in research that pseudotumors can be linked to sleep apnea and was wondering if anyone had been diagnosed with one and what could be done about it. I am hoping that there would be something that could be done to alleviate the pain and pressure. Also, how can sleep apnea be linked to this? Is it the side effect of high blood pressure caused by sleep apnea? My blood pressure has gone down a little but not a lot and I was hoping so much that with the CPAP therapy it was lower enough to help me control it better.
Maybe this is just something I need to ask my doc but I was just curious and thought I'd see if anyone had experienced this.
I may not even have this condition and my headaches may be caused by something else but I will be finding out shortly.

[Namlehse]

On doing a search for Acetazolamide I found this post. I too was found to have Pseudotumor Cerebri (Idiopathic Intracranial Hypertension, or IIH) brought on by OSA/CSA's. My titration left me with an AHI of 81 untreated.

With that said, I decided to search for Acetazolamide/Dimox due to recent changes in my sleep. I stopped taking Acetazolamide recently due to no longer being able to stand the side effects over the benefits. Recently my CSA's have spiked. With a pressure of 19 I now have an average AHI of 10 per night. After doing some reading, Acetazolamide is also used to treat CSA's off label.

When I did my titration study, I was still taking it (I wasn't told to stop).

When all of this started for me, I was 350 lbs at 6'4. I've since dropped to roughly 300 and I'm still having to take a diretic to keep my IIH under control even with my sleep apnea mostly controlled.

Around a month ago I was diagnosed with Lyme disease, which apparently I've had for some time. That has since been decided as the actual cause of my IIH (Pseudotumor). If you're still having issues even after dropping weight and being on xPAP it may be worth your while to get tested as well.

Also for anyone with this issue being tested for OSA, be sure to talk with them about not taking Diamox/Acetazolamide while doing the study. Apparently it's not a full blown thing, but it can effect the results in more ways than one.

[MarkG]

I hope you all are still here? Anyway I am a 47 year old male at 5' 10" a weight of 350lbs with sleep apnea, high blood pressure and recently diagnosed with Pseudotumor Cerebri. I had all the tests you spoke of and had spinal fluid tested. Nothing was found, and I am on the drug discussed. I have no headache, but I am 25% blind in my right eye. I noticed when I first went on the meds I lost 10 lbs of water weight, but no improvement on vision. I have been on the drug now for two weeks with really no improvement. Wondering if anyone has heard anything new about this disorder.

[avi123]

When I read about it at Mayo Clinic I see that it's a well-known situation and has proven treatment. So I am optimistic that you'll be doing OK:

Treatments and drugs
By Mayo Clinic staff

Pseudotumor cerebri treatment typically begins with medications to control the symptoms. Weight loss is recommended for obese individuals. If your vision worsens, surgery to reduce the pressure around your optic nerve or to decrease the intracranial pressure may be necessary. Once you've had pseudotumor cerebri, you should have your vision checked regularly.

Medications

Glaucoma drugs. One of the first drugs usually tried is acetazolamide (Diamox), a glaucoma drug that reduces the production of cerebrospinal fluid by at least 50 percent. Possible side effects include stomach upset, fatigue, tingling of fingers, toes and mouth, and kidney stones.
Diuretics. If acetazolamide alone isn't effective, it's sometimes combined with furosemide (Lasix), a potent diuretic that reduces fluid retention by increasing urine output.
Migraine medications. Medications typically prescribed to relieve migraines can sometimes ease the severe headaches that often accompany pseudotumor cerebri.

Surgery

Optic nerve sheath fenestration. This procedure cuts a window into the membrane that surrounds the optic nerve. This allows excess cerebrospinal fluid to escape. Vision stabilizes or improves in more than 85 percent of cases. Most people who have this procedure done on one eye notice a benefit for both eyes. However, this surgery isn't always successful and may even increase vision problems.
Spinal fluid shunt. Another type of surgery inserts a long, thin tube — called a shunt — into your brain or lower spine to help drain away excess cerebrospinal fluid. The tubing is burrowed under your skin to your abdomen, where the shunt discharges the excess fluid. Symptoms improve for more than 80 percent of the people who undergo this procedure. But shunts can become clogged and often require additional surgeries to keep them working properly. Complications can include low-pressure headaches and infections

[Julie]

Hi - I worked for neurologists in the past and have seen a few patients like yourself. The poster just prior to my note (Avil) has found some pretty good info. on the condition and you might want to take a look at it. Complications can involve your eyesight, but that's not to say it will happen to you, but I strongly advise you to listen to your doctors (a second opinion - other neurologist - would be an idea too) and not to us otherwise because every person's case and experience is different. You don't want to either needlessly worry yourself or run around looking for stories even from other patients who may not have completely understood their own cases... certainly we're intelligent and able to process info, and doctors can be doofuses too, but for something like PC you need to take things carefully. A good idea is to make a list of questions for your doctor and make an appt. to ask them (now that you have a better idea of things). I hope they go well for you!

[sickwithapnea17]

I took one dose of diamox and feel sick today didn't sleep well on the asv. that sounds bad to decrease cereberalspinal fluid production, does that cause brain damage?
does it cause severe nausea, stomach upset or is that the chinese food poisoning?

[JohnBFisher]

... I took one dose of diamox and feel sick today didn't sleep well on the asv. that sounds bad to decrease cereberalspinal fluid production, does that cause brain damage? ... does it cause severe nausea, stomach upset or is that the chinese food poisoning? ...

SWA, once again we have you trying things willy-nilly.

For other readers, please understand that for those patients that need it, reduction of cerebral spinal fluid is helpful. However, for those that do NOT need it, it can cause serious side effects. SWA/Dying walked into that buzz saw with his eyes open. What do you expect?!! Just because you can take a medication does not mean that you SHOULD take a medication.

A quick check of possible side effects reveals:

Adverse reactions, occurring most often early in therapy, include paresthesias, particularly a “tingling” feeling in the extremities, hearing dysfunction or tinnitus, loss of appetite, taste alteration and gastrointestinal disturbances such as nausea, vomiting and diarrhea; polyuria, and occasional instances of drowsiness and confusion.

Metabolic acidosis and electrolyte imbalance may occur.

Transient myopia has been reported. This condition invariably subsides upon diminution or discontinuance of the medication.

See: http://www.rxlist.com/acetazolamide-sid ... center.htm

As you can see, this medication should only be taken if needed. And even then many patients can not tolerate it.

[Janknitz]

I know it seems ridiculous to think that diet may have anything to do with this, but it's something worth considering--altering your diet has no truly negative side effects, and just might be helpful.

I highly recommend the book Grain Brain by Dr. David Perlmutter, who advocates a grain free, essentially low carb diet. IMHO, it's worth a try. Even if it doesn't help your condition, you may find it an easy way to lose weight. Your diet center doctor may profoundly disagree with Perlmutter's approach--after all, what does Perlmutter know? He's only a treating neurologist who has seen very positive results with various neurological issues and read the relevant research. The fact that he has a book to sell is a consideration.

I'm just putting it out there as an option. With your vision at stake, it might be worth considering--if it doesn't help you'll know, and if it does help, you'll be so much farther ahead of the game as it may reduce or eliminate your need to deal with medication side effects and painful procedures (I'm not saying you should forego the conventional medical treatment and monitoring, but this may reduce the amount of treatment you need).