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...
Hello, I haven't been on here for awhile. I was in my third remission of IH. But then 2 years ago I had a LP shunt revision and then 6 surgeries for CSF leaks in my spine and my LP shunt was disconnected and I went into remission, but now my IH has returned with my papilla edema. (I had a LP shunt because my ventricles were too small to do a VP shunt). My NO put me on Diamox but I could only tolerate 500 mg a day and had to stop that because it was making my headaches worse and I started to throw up daily. It did take a little bit of pressure off of my optic nerves but my swelling was still prevalent. So now I am trying 100 mg of Topamax that I take at night. I talked to my neurosurgeon who said he would not go near my spine again because of all the complications I had and I am scheduled to do a CT scan to see if my ventricles are large enough to do a VP shunt. (Another concern is that I had a kidney transplant about 9 years ago and am on immunosuppressants which makes everything more difficult). He told me if he can't do a VP shunt to talk with my NO about doing an optic nerve fenestration but the thing is I have such horrible headaches. I feel so frustrated and scared. My husband was just dx. with rheumatoid arthritis and needs a total hip done and I need to get well enough so I can take care of him during his recovery phase. I am really at a loss of how to get my headaches under control. I also talked to my NS about other shunts but he said they were very tricky and did not have great results. Does anyone have anything else that helped their headaches? Thanks for letting me vent and share!
This may be slightly controversial, but I'm the type that's very open to alternative medicine, so I can tell you what helped me.
Medicinal marijuana, it was the love of my life during my worst headaches, I've yet to find anything on this earth that can knock out a headache quite the same. Obviously smoking marijuana would be a BAD idea, the coughing alone would cause increased pressure. So, what was recommended to me was the use of edibles and intake by means of vaporization. Not only did it completely alleviate the majority of my headaches, it helped me tolerate the nasty side effects of Diamox. Anytime I felt even the slightest nausea, I'd pop a hard candy in my mouth and within 15 minutes I'd feel much better.
Just a thought, I don't want to tell anyone to go out and use marijuana if it's not an idea you are comfortable with. BUT, I noticed your profile said you were from California, so if you wanted the option, you could.
Lastly, sorry for your husbands recent health issues, how difficult it must be to both be unwell! I'm sending positive thoughts and vibes your way! Feel free to message me if you ever need anyone to talk to.
Well wishes,
Amethyst
I am sorry you are going through such a tough time, it must be so hard for you! I just wanted to offer you a few words of support.
I am english so i cant offer any advice of medical marijuana in the USA. and i would assume that by now you would have tried all the regular painkillers neurontin and amatriptalyn etc.
Topamax can go up to 400mg a day - but we don call it dopamax for nothing - many people dont get on with the side effect of confusion and brain fog. i am on 200g and i am ok but to be honest - i didnt rate topamax for stopping the headaches without being used in combo with diamox (which you said you cant have).
But to keep on with alternative therapies, you can get good short term relief (2 or 3 days or so) if you find a very good osteopath who can does cranial work. They are very good at taking the pressure off of the temples etc and moving on the CFS out of high pressure areas in the skull. They can also help clear the neck and shoulder lymph nodes and increase circulation through massage (all key for CSF drainage) but the CSF can then build up again after the session so the effect is only temporary - but if they are good at their job, it is very good. The other thing to consider is if you can get it on your insurance, or i don know how much these this cost for you in the USA. but if you can get the right one it might be worth a try.
good luck with every thing.
I'm so sorry about what you are going through! it took me awhile but I finally remembered the type of shunt I'd read about here:
http://www.dailystrength.org/c/Psuedotumor-Cerebri/forum/17591631-lp-opening-pressures
I wonder if you would want to get in touch with Tammi? to ask more about her cisternoatrial shunt which she has great things to say about it.
I went into remission after a maxillomandibular advancement.
there is a paper on PubMed about the medicinal form of marijuana treating PTC, so that is a non surgical option.
Just saying hi. I read along but don't post much. So sorry to hear things aren't well. Wishing you and your some good health.
Mary
ps. I really love your avatar. :)
I cheat on the vegan aspect sometimes (definitely on Thanksgiving & Christmas), but never on the gluten aspect (no such thing as cheating...if you ingest a little, you do intestinal damage) and I never purposely try to overdo intake of food with moderate to high levels of S, G, or NO as I'll be on the couch the next day with intractable head pain.
This diet keeps me off all meds expect the occasional ibuprofen. Recently I started taking CoQ10 instead of ibuprofen when the pressure would rise, and all three times it worked as good as, or better than, the ibuprofen, but that's not quite enough to make it "data" yet, and it is unlikely that I will add a daily dose of CoQ10 at this time because clearly too much of a variety of consumables can exacerbate PTC.
On the lists of meds that can *cause* PTC is Diamox, for example, which is why I refused my doc's offer to take it and went the diet restriction route instead.
Interestingly, I have never had significant head pressure increase after cheating on the vegan aspect if I also consumed alcohol with the meal, but I do get increased pressure (sometimes significant) if I eat meat/cheese and did not have alcohol with my meal.
I don't know if it is because of the fact that alcohol depletes Vitamin A stores (in some way, I've never researched the mechanism) or if there is another reason. My experience is definitely well beyond the experimental phase though (although I'm still not sure I would call it indisputable "data", but for me, there is a link).
No one with RA should be consuming any gluten whatsoever. Absolutely no one. And it's likely that they should not be consuming animal products either. See this study: http://rheumatology.oxfordjournals.org/content/40/10/1175.full
Very few RA meds are disease modifying (as opposed to masking symptoms or slowing down the progress) that I am aware of except diet (especially gluten exclusion, but apparently now it's known that vegan helps too), and low dose minocycline (and I mean low dose, because moderate dose will get you PTC). My grandmother had RA, and I began to develop it until I removed gluten, then I stopped having symptoms.
I have since learned that I cannot tolerate even gluten-free oats either. If I accidentally ingest gluten (because the waitstaff or menu in a restaurant said something was gf and it was not), I cannot open my hands in the morning and my knees/hips hurt for about 36 hours.
BTW, I try to incorporate as much raw food as possible, but my system does not like a lot of bacteria from raw food apparently (get UTI symptoms if I eat a lot of fermented foods), so I am only eat about 50% raw food, and I feel just as good at 50% raw food than I did at 80-85% raw food.
My kitchen/fridge/pantry looks so different today than 4 years ago. No meat in the freezer (just veggies & fruit) and no cans of tuna, bags of flour or oatmeal in the pantry (lots of brown rice & vegan organic soups instead). Looking back, I ate a lot of chemicals and foods our body was not designed to eat (we have no claws, no mouthful of canine teeth, etc.), and I would not wholly go back to my former diet even if my head pressure returned to normal.
Kind regards,
Cottages